tag:blogger.com,1999:blog-1959819497470946922024-03-13T03:00:39.464+00:00Down in front, please.Disability is not disaster.Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.comBlogger148125tag:blogger.com,1999:blog-195981949747094692.post-38860621126549935762022-02-18T00:19:00.006+00:002024-02-01T19:32:17.042+00:00The Peddlers of Misery<p>One of my most vivid childhood memories involves Labor Day weekend. </p><p>Not so much for barbecues and baseball games, but for a three-day telethon in support of the US Muscular Dystrophy Association. My mother was an avid viewer of this annual celebrity-infused fundraiser, and I’ve yet to ask her why (although I’m sure she’ll now tell me, because I know she’ll read this). If I were to hazard a guess, I’d say it was down to the entertainment and the novelty of seeing how shit Jerry Lewis looked after having lost two solid nights of sleep for yet another year. If you’re imagining the Griswold’s Christmas turkey you’ve pretty much nailed the look.</p><p>At any rate, the format of the programme meant that over that long holiday weekend, between celebrity appearances, he’d interview a veritable conga line of fundraisers, as they’d introduce one after another person with some gut wrenching backstory, expressing how utterly ‘needy’ and ‘inspirational’ they all were. Tearjerkers galore. It always made my stomach churn.</p><p>He’d sing “You’ll Never Walk Alone” to close the show. It touched my mom’s heart. It touched many hearts. It still does apparently, because it seems to still be going on. Despite old JL passing away, it seems to be new host, same show, if Google is to be trusted.</p><p>And here I doubt my mother ever called in and donated a dime (money was tight back then), but when those giant checks came out in the loving arms of their fully suited and booted purveyors, who grinned and gurned at all the good deeds they’d done to somehow pull together a donation of twothousandeighthundredseventysixdollarsandfortytwocents to help those poor, troubled, needy, helpless children, I always felt ill at ease, but could never quite put my finger on the reason.</p><p>Fast forward to 2002. </p><p>I started a new job here in the UK on the one year anniversary of 9/11, getting stuck in after swabbing away the tears in a conference room with my new colleagues. The work was to do graphic design at a charity aimed at supporting elderly people who were once well off but had come upon hard times. What I mostly remember about that job is that I had to hike up and down four flights of stairs for a cigarette, and I could look out the back window and see Margaret and Dennis Thatcher having tea on their deck every morning. Even got view of the blue suit once. </p><p>But the job itself wasn’t a good fit, and due to the ‘you are on 2 months probation and so are we’ setup I actually let them go, and we parted company. They don’t even appear on my CV, it was that uninspiring. This begging game, ‘be sure to bold face and underline that sentence, and use the picture of the woman frowning, that’s the one…’</p><p>Jesus wept. (But I don’t want to.)</p><p>My son was born ten years later, on a freezing February day in a freezing hospital which was under the watchful eye of the CQC due to repeat failings. I’ll not repeat the journey carried in my blog from day dot, but I look back now and largely see ableism screaming and glaring at me from every page. That deep-seated need to prove the doctors wrong, to celebrate every triumph with the copy equivalent of an oompah band, to prove to people reading, to all of society, that he has worth. That he isn’t nothing, that his life is deserved and he is someone to be cherished and treasured.</p><p>Who has to say that about their child? If you’ve ever, I’m with you. I hear you.</p><p>Still, why did I have to demand all that? What in the hell did I have to prove? Don’t all lives have inherent value? Don’t we all bleed red?</p><p>47 chromosomes. 47.</p><p>Look at that, some combination of number and letters that has the most inordinate power within them. There was a time that number and those letters meant absolutely nothing to me.</p><p>Today they are everything.</p><p>Join me now in 2022. What a galactic shit show. </p><p>What has always given me the illusion of community has become a giant digital dodgeball tournament, all because a handful of passionate support groups said enough is enough, “the state of affairs is shit, and it’s actually ridiculously easy to support our kids. Let’s work together to shake the tree.” </p><p>And would you believe it? Someone listened.</p><p>Someone <i>listened</i>.</p><p>This is not the doing of any national charity. </p><p>This is not the result of some specific long-term campaign and politicking. </p><p>This is what it looks like when grassroots activists set out to change the world…</p><p>…and get lucky.</p><p>The Down Syndrome Bill was the result of a Private Member’s Bill by MP Dr Liam Fox, and largely a result of the luck of the draw. Like, for real, he came up in a ballot. </p><p>A <i>ballot</i>. I can’t even get into the London Marathon on a ballot.</p><p>People, this shit does NOT happen to our community. Rukai and others like him have perpetually been at the bottom of the food chain. The NHS tests pregnant women to eliminate people like him. No one wants a Rukai. I certainly didn’t want a Rukai. And that kills me now because I know better. My favourite human. No grudges, no bullshit, no ego.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjFvIwEpln3Nep_aUGXSP9Mnsco3KIjzq70RNxnYJq_yoz0VLxSeTJCMu-6fsy59D6TlfwDjdW9AY6ZNGosuV-Qcf8o5iPMnB2cgIWm9Ghl3OImnzFdR7rEuuRoLDQSLC19IdL4wpyzllNZ3MN-g9xl-vOMCVRs2O-RjRaHj-RjaOURS-4CGlYvQ-NuXQ=s2032" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2032" data-original-width="1922" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEjFvIwEpln3Nep_aUGXSP9Mnsco3KIjzq70RNxnYJq_yoz0VLxSeTJCMu-6fsy59D6TlfwDjdW9AY6ZNGosuV-Qcf8o5iPMnB2cgIWm9Ghl3OImnzFdR7rEuuRoLDQSLC19IdL4wpyzllNZ3MN-g9xl-vOMCVRs2O-RjRaHj-RjaOURS-4CGlYvQ-NuXQ=w605-h640" width="605" /></a></div><br /><p>But why? Why didn’t I want a child like him?</p><p>Jerry bloody Lewis. Him and his ilk.</p><p>What is the point of the great big pity party? How much does that kind of peddling misery inform societal beliefs as to what brings value to a human being? Answer: zero.</p><p>I see someone keep banging on about how it’s not ability that gives a person value, it’s love. Actually, that’s a festering crock of shit. Are abused children lacking in value? Are orphans lacking in value?</p><p><i>Existence </i>gives a person value. Love gives a person comfort.</p><p>And despite what we know to be truth about spectra, kaleidoscopes, fucking pinatas, whatever you want to call that great big mix of differentiation amongst people with Down syndrome, they all have worth. Capability doesn’t even get a look in. </p><p>What capability does is to counterbalance that negative pity party shit still so endemic across our society.</p><p>Ten years ago I raged against the machine. Hell, I raged against the bloody sun rising every day when my son was younger, “how DARE you think he’s less than?! How DARE you!!” That anger just dissolves your humanity. That serves nothing but your need to rage. Rage is not a positive emotion. And I guarantee you as sure as I live and breathe, shouting someone down will not bring them on side. Demanding people to recognise your issues when they are of zero concern to Everyman, is bloody unrealistic and you are the Grand High Exalted Rainmaker of Cloud Cuckoo Land.</p><p>But here’s that weird life Venn diagram rolling in again. I’m an ultrarunner. I’m bloody slow. I run some and I walk some and I train a lot. A LOT.</p><p>I have a realistic expectation that 1) I entered the game too late to be an elite but I sure as hell can become the best version of me going, 2) I will likely never win a race, but I’ll be damned if that prevents me from entering the ones I want to take part in, and 3) The only way I will make progress is to be patient and not expect success. Despite how much you feel you deserve success, if you want to finish a race you have to start slow and to keep moving until you reach the end. Sometimes you go alone. Sometimes you have company. There is no entitlement in ultrarunning. There are no guarantees.</p><p>Sometimes you are progressing in the daylight and sometimes in the inky and starless void of night.</p><p>Oh life!</p><p>But lo and behold, it’s that last bit that is the most important, that thing that the modern peddlers of misery refuse to accept. That every forward step is a move towards something better, even when you cannot clearly see where it is you are meant to be going. You go. </p><p>You go. </p><p>That tearing something apart because you don’t see immediate benefit to yourself is not only selfish but it is the surest way to fail completely. We rise by lifting others. Boat analogies welcome.</p><p>You can rage against the machine. Or the community. You can cry it’s unfair and why not me, I want it all and I want it now. You can scream about division but in the screaming it is you doing the dividing. There is no entitlement to joy, you have to seek it. </p><p>Sometimes even earn it.</p><p>If you choose to peddle misery you will only find yourself surrounded by the miserable.</p><p><br /></p><p><br /></p>Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-14638406417620099452021-10-15T19:00:00.010+01:002021-10-15T19:01:34.690+01:00DNF: education edition.<p></p><div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCV1Ub8IqoGQpYd8dh1IvG2gMSGqk-SOQl_qdB5ToJki7PxEycnbVmssdIpTi-zeHcmb1k9p83RhBnQJwJ1nTqHxqC5KzXfOdyOqd1ACK7zFv2hcrmBREGm_kV2wIJpRdIhobSjRaKCJGQ/s1483/VID_20210920_205326682_exported_84434_5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1483" height="466" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCV1Ub8IqoGQpYd8dh1IvG2gMSGqk-SOQl_qdB5ToJki7PxEycnbVmssdIpTi-zeHcmb1k9p83RhBnQJwJ1nTqHxqC5KzXfOdyOqd1ACK7zFv2hcrmBREGm_kV2wIJpRdIhobSjRaKCJGQ/w640-h466/VID_20210920_205326682_exported_84434_5.jpg" width="640" /></a></div><br />I will start with this: mainstream education has failed us.<p></p><p>That grand experiment in inclusivity is indeed little more than scientific hypothesis, suggesting that if we mix the two worlds together, each shall benefit from the other. But sometimes the scales tip deeply in the wrong direction. Sometimes mainstream benefits, yet it is the child actually fanning the flames of understanding who gets left behind.</p><p>Not for much longer. It's time to go.</p><p>Our mainstream primary school has been the most caring, beautiful place on earth for nurturing an inclusive approach. My son, this disabled child who learns more slowly, whose behaviours go well against the grain and whose words are currently best spoken with two palms and ten fingers - this child is no longer learning anything at school.</p><p>How hard is that to comprehend, let alone type?</p><p>It is important for you reading this to understand that this is not his failure. </p><p>Read that again, I'll wait.</p><p>This failure to deliver an effective mainstream education to my son is down to systems which don't fund the appropriate support, the right training, the correct staff, to mingle in with the mainstream - without teachers and LSAs frantically doggy paddling to stay afloat and absorb specialist techniques and knowledge on the fly. That's not to say they didn't throw everything they had at it to support him. My heavens, did they. My heart is so full and I will love them all completely, until my last breath.</p><p>But this remains a desperately flawed system which tries to jam square pegs into round holes, all with one eye shut, to force fit everyone into a single, inflexible, one-size-fits-all curriculum. It's tragic on every level, really.</p><p>It is down to a society infected with ableist beliefs, one which places far too much emphasis on pace and power and money and barely any on empathy and compassion and patience.</p><p>This is not his failure. WE are the disappointed party.</p><p>The fact remains that we are ecstatic for the opportunity to enter a world of education which actually sees him properly. One which understands where he has come from and where he will go, and at what pace he'll get there. His. Not some generic book of standard pace, but HIS.</p><p>We're about to join the costlier of the educative roads. That which people love to call 'special' and mock and pity and feel shame towards, and I would beg to differ but I don't beg. </p><p>It's not special. It's appropriate.</p><p>(Best read that twice, too.)</p><p>Once again, I sit in stunned silence wondering how we are so fortunate to have been told at such pace, 'yes, we agree he needs more structured and tailored education, so here - there's a place for you at a specialist school...</p><p>'THIS autumn term.'</p><p>We're visiting a potential school on Monday. The proposed start date is not yet confirmed but fits into 'this autumn term'. Guess what folks, it's autumn and we're four school days away from half term.</p><p>This pace is so blisteringly unfamiliar I cannot stop crying from the anxiety of it all. Because, quite simply, we don't do fast here. Ever. With regard to anything.</p><p>Still, the delight which I find in not having to draw a sword and go to battle, in being heard, in the fact that my son is being SEEN. Quite probably a few years too late, but our previous attempt at progress was mashed to a pulp in March 2020 just like everything else.</p><p>Pace now, is welcome - albeit terrifying.</p><p>The lack of control over such an important situation is not only awful but it requires me to free my caged and ravaged heart and dole out great swodges of trust to absolute strangers. This is something I don't do well. I've only ever done it during those epic long trail races, with likeminded people looking after me, seeing me on through the dark night, their own beacon of light joining mine to help guide the way.</p><p>Ah and there we have that Venn. Two lights shine brighter than one. Trust is earned but sometimes trust must be gulped down and inhaled and you take that backwards fall or that leap over the edge, expecting the cushion, expecting the arms, expecting the destination to comfort and caress and buy you a coffee or a pint, depending on the time of day.</p><p>But really - how do you like that? Another DNF. We made it to year 5, just. Time to put it down. On our terms. Feels familiar.</p><p>That mainstream journey hasn't worked out because of those very harsh and scratchy words 'severe learning disability' - only harsh and scratchy because, truth be told, like everyone else I was an ableist dick in my life before Rukai. And he's nearly 10 and I'm still working on it - working hard.</p><p>How that shreds my heart. He's my SON for fuck's sake.</p><p>But my God in the great beyond, I feel exactly like I did on hearing his diagnosis. But why? This is not his failure. This is not a failure at all. We've decided to move on because they no longer know how to teach him anything. </p><p>Fact.</p><p>This. Is. Not. His. Failure. That repetition more for me than you, but do register it. I'm livid that I'm so stressed out about this. It's a lonely old life, mine.</p><p>And the pace, that blistering pace, here we'll guide you, go here, do this, go there, see them...</p><p>I cannot trust anyone enough to feel comfortable with this. But I know that mainstream has failed to deliver and this is what my son needs.</p><p>Special school? No, and that's the rub.</p><p>SPECIALIST provision.</p><p>See the difference? Words matter so much. That ableism boils beneath most people's skin. It's woven into our sinew. It's not the potential new school and it's students which are special. The people who do the educating and their techniques are beyond the ordinary levels of expertise. What is a specialist after all? A subject matter expert.</p><p>Huge knowledge. The right kind of expert.</p><p>And I'll wait for you to digest that, too.</p><p>I detest my historic thinking, and see it on the faces of those parents during the school run I will probably delight in abandoning, looking at us with a head tilt and an awww, or with abject horror as if we are foaming at the mouth, encased in a neon green fog with horns growing out our heads. Climbing up our heels as we shuffle towards the gate, impatient, churning, palpable frustration just oozing off so many of the folks behind us.</p><p>Of these all, so few come up and say good morning. The ones who do truly rock our world. The child having a lovely chat with Rukai - in Makaton - yesterday was enough for me to cling to, for what will soon be forever.</p><p>Ah yes and there are them tears. Rolling in the deep, still a fire starting in my heart. I'll need a bit of salt later - been some few days around here, what with all this emotion.</p><p>But alas, we were part of that world once. For five and a bit years, we were there. We did not finish - they couldn't do enough for him.</p><p>This is not his failure. </p><p>It's time to go - so we're going.</p><p>Remember him.<br />Remember what you learned. <br />Remember what he taught you.<br />Remember how he shines.</p><p>Remember him.</p>Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-30679323822728624722021-05-18T11:14:00.002+01:002022-07-08T15:15:46.040+01:00Bacon and age.<p><i>(Originally posted on Realbuzz community)</i></p><p>My head, when writing about running, has been as blank as the race calendar I'd planned in 2020. What an odd place to be, where I've done more mileage, more training, than I'd ever done in my life, for no reason other than to not wither up and die of boredom? Some 1200 miles on the Strava clock last year, and the start of this one containing over 600 miles and 60,000 feet of elevation already. The only way is up, indeed.</p><p>But dear God, tell me I'll use it. I'm seeing the sparkle of an imminent race, but like that magic trick that goes wrong where they pull the carpet away and the tower comes tumbling down, this time, this madness, jumps up and nips us in the achilles right as we're readying for the starting gun. I am expecting the worst. Tell me I'm wrong. Just do it.</p><p>That joy of digging out the box of race shit! The hustle and bustle of a registration tent, teeming with adrenaline, big dreams and lurking nightmares. Broken personal records, and racks soon to sink under the weight of new bling. </p><p>It all went the way of the dodo didn't it? Please let it not anymore. Please. </p><p>Please.</p><p>Good lord, what a long and arduous year, that 2020.</p><p>I bid it farewell with a load of training on my legs and an elevation challenge taking the place of the regular December Marcothon. Unfortunately what I'm calling 'not-Covid' struck me down for a month (I think it was but the test/s didn't, so there ya go) and after a stint in A&E and some emergency tablets to get asthma under control in December, I re-commenced the training plan in January. </p><p>Now this has gone the greatest of guns up until a couple weeks ago when ye olde peroneal seems to have contributed to a new foot injury after I found some glorious new hills in Epping Forest to call a playground. Sure, maybe it's not clever to go belting up and down 18-20 miles of hills more than once a week but I've now morphed into something of an an ultrarunner so this has become the new normal.</p><p>The only part of the new normal I like, mind, yet still, running long is the blood and breath that keeps me vertical. While all of life is falling down like a toppled tower of cards, mine is in a tumble dryer and I'm spinning, spinning, trying hard to rescue that mad sock before it disappears into wherever those mad socks go. Without these miles, my mind would have broken long ago.</p><p>Now. 2021.</p><p>I'll start with 'at present, my shortest race is 50 miles'. </p><p>That's mental. I really must book in a few shorties, but that's where I'm at. My time has suddenly become severely limited and when time is limited I go long and long and long.</p><p>But in that 2021 is a continuation of what didn't manage to happen in 2020, that's where we make up the lost races.</p><p>This is also the year I turn 50.</p><p>Good lord. Did I just write that?</p><p>Of course, this, being me, means I have to now go out and do some mental things because that is what I do to feel alive nowadays.</p><p>This also being me means I'm doing it for a cause, and this would be for the most important other human in my world and that is my gorgeous boy Rukai. So I'll be waving the fifty flag to raise awareness of the new All-Party Parliamentary Group for Down Syndrome and raising a few bob here and there for the Down Syndrome Policy Group, which consists of grassroots campaigners representing those agencies who are doing all the legwork to ensure policy is in place to support people like my son into adulthood. </p><p>Because you see, his journey to 50 should not be fraught with exclusion and poor health care. It shouldn't be met with societal disregard and inequality. The DSPG will go the extra mile to make it happen and so will I.</p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhONj_pGkpC2G_cG-d1dFvsW0h3n63wZz-V58INi57KHMcQJKJhpKgJMtp11dygNgNZsUlXvbUi72gr2mWPcmt_ZHFkZ1Vht4NqFO8-ysJHb5cYC_t9P1rjzhexCXZ_luYwoECqSl4IrOzS/s886/bacon-and-agepng.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="876" data-original-width="886" height="395" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhONj_pGkpC2G_cG-d1dFvsW0h3n63wZz-V58INi57KHMcQJKJhpKgJMtp11dygNgNZsUlXvbUi72gr2mWPcmt_ZHFkZ1Vht4NqFO8-ysJHb5cYC_t9P1rjzhexCXZ_luYwoECqSl4IrOzS/w400-h395/bacon-and-agepng.jpg" width="400" /></a></div><p><br /></p>I thought I'd get a bit creative in naming the challenges I'm going after, because - me. So herein lies the plan:<p></p><p>1. The Hills Are A Lie</p><p>With a chapeau to Instagram's Ultra Running Memes and the known known that 'vert's not real', I am attempting my second ever 100k in Ultra Challenge's Lake District Challenge on the weekend of 12-13 June. I keep reminding myself that 100k is 62 miles in new money, because 62 is smaller than 100 and I don't think so much that I will die. In the midst of the 'Great Big Lockdown Running Spree of 2020' I did go out and undertake an unsupported 50 miler I lovingly named 'Sadistic Saturday' so I'm one longo closer to that 62. But still. First and last one was in July 2019, which feels like a hundred years ago. See? No escaping that hundred. Bloody three digit number.</p><p>My gauntlet going down now: goals are gold: sub 18, silver sub 20, bronze, finish in the face of some random catastrophe. 8600 feet of elevation in the books. Bring. It. On. (FWIW, my 100k PB is 22 hours and change. I thought I was dead but I didn't die. And Em was there! Magic.)</p><p>Oh and I'm camping. Ha! That's another thing I've only done once in my life. Because you only live through the year you turn 50 once so why not make everything you do totally unfamiliar and uncomfortable?! Why not, indeed.</p><p>2. Good Things Come to Those Who Wait</p><p>Not only because I like Guinness, but this really is a good thing that I've waited for. And waited, and waited and...well, you get the idea. The Shropshire Way 80k was meant to happen last year in April. Then it was happening last year in September. Now it is happening on August 14-15 (are you sensing a trend with the two day thing, here?) I expect to be reunited with a Buzzer or two on that weekend which is why I haven't postponed as a 50 mile / 8200 feet event two weeks before 'TheBigOne' is not as totally insane as it sounds. (Ok, it is, but Sir Bolty said he thought I could do it, so I'm doing it.)</p><p>3. Operation 86</p><p>Provided I don't die in the Shropshire Hills, I will toe the line for the longest.event.of.my.life. the Ridgeway 86, on Bank Holiday weekend, 28-29 August. This was meant to be the be all, end all event of last year, and has a special double meaning.</p><p>In the US, 'to 86' something is to get rid of it. What my intention is/was for this race is to get rid of my own fear of going such a massive distance, but to also encourage other people to get rid of their own fears and undertake an activity they're afraid of to challenge themselves. </p><p>The other intention is/was to raise awareness of the fears people have around Down Syndrome, the condition my son has, and to offer public conversation with honest answers about real lived experience so that people don't go through their lives perpetuating myths and stereotypes. I have been surprised for the past 9 years at how easily those have been proven wrong in my own life and I want to help others see how much potential kids like my son have. To give them a chance. To 86 their own fears. </p><p>I expect that finish line will be grinning and teasing me. I don't know if my legs will have the right stuff on the day but I'll deliver what I always deliver. And if I don't get to the finish line in the cutoff, I'll get to the finish line outside the cutoff. Provided there aren't any bones sticking out of my leg. You know, as per.</p><p>Now it must be noted that I'm debating pushing the envelope and trying to stagger to 100 miles (you know, once again if I'm not dead at this point), but I'd need a 14 mile route and some crew. All goers welcome if you think I'm nuts and strong enough to pull it off! Failing that, the final challenge of the year is the Great Big Birthday Run and I'm calling it...</p><p>4. Bacon and Age.</p><p>This is the Joker of the diary and it is most certainly wild and will most certainly be a bit of a pig for reasons of duration. Wild in that I've no real idea of what it's going to look like yet, aside from I'm going to start running at 6:58 pm on October 27th and conclude running at 6:58 pm on October 28th, which is the precise moment I was born and so turn the calendar over to officially old geeze. Why not run in the new decade?</p><p>I'm not sure where I'll go, other than I want to do some varied loops in a beautiful place in the UK, going back to the same start point in between so I have a base camp and lots of food. Hopefully some bacon as that is the nectar of life (aside from Guinness). If I don't swing the 100 mile thing in August I may try in October. Or I may say hell with it and run a mile an hour. Jury's out. All I know is when I leave this decade and enter the next, it's going to be at pace. Because, me.</p><p>After all, relentless forward progress is the name of the game. </p><p>In between all this, it must be said that my actual personal life is in a huge amount of chaos but it is because of all this that I know I will come out a winner there, too. I will reach the finish line, because that is what I do. Stopping just gets you stiff and cold and short of your destination.</p><p>To all you Buzzers old and new (but not the CBD spammers, you can collectively go do one) I wish you miles and miles of joyous running. May we all meet again soon enough.</p><p>There's nothing like a Buzzer hug and my well's run dry.</p><p>Go forth and...</p><div class="separator" style="clear: both; text-align: left;"><br /></div><br /><p><br /></p>Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-1453642879388591402021-01-25T23:22:00.002+00:002021-01-25T23:24:24.887+00:00Because, WE.<p></p><div class="separator" style="clear: both; text-align: left;">There is a threshold at which every human being is tipped over the edge. The edge of patience. Of reason. Of tolerance. Of sanity.</div><p></p><p>It is safe to say I don't believe I know anyone who isn't currently teetering in some way. Sure people may be pressing back their shoulders, loudly announcing to the world that it's all in hand, I'm good, I got this, I'm still here, I'm still going, but naw, it's cutting deep and we are all wounded. I can see you bleed.</p><p>I can't tell you it will all be ok, but -</p><p>I embrace you from a (safe, social) distance.</p><p>I pass you a sanitised box of tissues to wipe away that dismay careening down your face. It'll stain if you don't wipe it off.</p><p>Trust me.</p><p>Where are we? Good lord, where on earth.</p><p>We are living through what has been a monumental catastrophe for so many but that which is utterly disregarded by their opposites.</p><p>This taker of loved ones, this culler of humanity, morbidly viewed as little more than an unnecessary inconvenience, a cancelled holiday, a missed opportunity to go out clubbing, drowning in why can't I watch my football team live? It's. So. Unfair. Why?</p><p>Because, WE.</p><p>WE.</p><p>That we are all in this together is not in doubt. The question is, who is going to smother those at the bottom in their efforts to climb out first? Who will launch themselves ahead, smearing mud across forgotten faces? Who will forget to drop a rope? Who will cry exhaustion when it is their turn to pull?</p><p>Because, WE.</p><p>I am bemused, to be fair, having had the luxury of years of experience within the Great Big Pity Party, blessed with my son, who is so much the same as his peers, yet always, always, quite markedly different. As a mother, you certainly don't want your life to be so different. But mine is. Hand on heart, some days that absolutely destroys me. Then I pull my head out of my ass and remember I chose to be a mother and my son is the best person I know. I remember that most days I'd take ten of him.</p><p>Still, some days I just CAN'T.</p><p>How many days spent feeling sorry for myself that my world is not like that of other people, that I have to spend so much time teaching my only child those skills other children just fall into, that I have to decipher, translate, interpret, all manner of body language, attitude, emotional adjustment, as a means of communicating in the absence of the spoken word?</p><p>But that is my job. I am his mother. He deserves every minute of my time. </p><p>How many years have I avoided writing some of the feelings for fear of the 'I told you so' posse? </p><p>Here's the rub: I don't give a shit anymore. You can't bring everyone on side. If any time in history has proven that, it is this time.</p><p>I pound the pavement and chew up the trails, questioning it all.</p><p>I smile, like the great Eliud in grief and pain. </p><p>I grin. I bear it.</p><p>I cannot claim it is always easy. </p><p>I CAN claim I love my son with a fervor you would never understand if you hadn't had a love like it. And nobody 'told me so' about that.</p><p>Still...</p><p>How very normal is this lack of normal? Ridiculously.</p><p>We haven't got out as much as other families, not ever. Because, just like celebrity, there is sometimes too much attention and you never know if it will be uplifting or a(nother) stake in the heart. I find myself endlessly more fragile than my toughened exterior may hint at, splintering so easily when someone shocks me out of my idealist positive approach with the reality check that most people think my life is probably less than. Just like they think that of my son. I'm not a fool, I know this.</p><p>You reading this, you too may think this. You're allowed. It's ok. Some days I may agree with you. Other days I'd slam the door in your face and curse at you til you were out of sight. </p><p>All about balance, in all things.</p><p>A blessing of this pandemic? Odd, but yes, there have been a few. The big one is the lack of encounters has all but eliminated the bad kind of attention. The only people in our lives the past year have been those who love us.</p><p>Isn't that bloody marvellous?</p><p>Still for us, this new normal is not new at all. This new normal only brings with it the crisis of contagion. </p><p>We are a DS family. We are a SEN family. </p><p>My son is disabled. I couldn't say that for years because I thought it was a dirty word, something to fear. </p><p>I'm not afraid of my son, nor should anyone be. Disability is not disaster. </p><p>What IS a disaster, is that this new normal - in the middle of a pandemic - feels so utterly, totally normal to us. It feels normal to us when everyone else on God's green earth is losing their shit because their world is so far off piste and it feels like it will never right itself. </p><p>My son has been othered for all time. We are isolated, we are separated, this is nothing new. Our world is myopic. Here, pop these lenses on. Welcome to the disability disco.</p><p>Isolation so ordinary but what IS new, if not this 'normal'?</p><p>What IS new, is the pace in which my ridiculous overabundance of patience is waning.</p><p>What IS new, is the fact that everyone, everywhere suddenly understands what our normal looks like. My God, I wish it would stick! I wish they would all FEEL it! Process it! </p><p>Remember it, when you are back in the club, the stadium, the playground with slides that only have steps made of rope. </p><p>And we are here wondering if we will be accosted by disdain on our next trip to Tescos.</p><p>Isolation is a reality for families like ours, for kids like mine.</p><p>I genuinely can't tell if I feel sorry for everyone on the entire planet who is suddenly feeling so isolated, or if it is actually quite liberating. It may be met with great curiosity as to how I can stay so perennially positive and optimistic during this hideous and difficult time. </p><p>And here, I'll tell you - it's because I learned just about nine years ago that there is no other way you can survive when the world will forever push you aside. Chin up, eyes on the prize. Keep moving. Relentless forward progress.</p><p>Today,</p><p>In your dismay and your horror,</p><p>In your darkened outlook and your fear,</p><p>In your desperate hope that one day soon this isolation will end,</p><p>I wish that your every dream comes true.</p><p>I know others - just like me - will too.</p><p>Because, WE.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFPzJmDQcDdajUu_0DKJLFXR6WC1yknKJNObZzAsyvWLMNFFQi9I-pcmME08EU87azCInc7NJBDBN5na2TwFq7UULW3iWwP9Qodi_lFZceKy3897G_yNJZZH3dUIR67CRwbkk09T7DViU8/s1080/Because%252C+WE.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFPzJmDQcDdajUu_0DKJLFXR6WC1yknKJNObZzAsyvWLMNFFQi9I-pcmME08EU87azCInc7NJBDBN5na2TwFq7UULW3iWwP9Qodi_lFZceKy3897G_yNJZZH3dUIR67CRwbkk09T7DViU8/s320/Because%252C+WE.jpg" /></a></div><br /><p><br /></p>Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-74209241404228461652020-11-25T00:21:00.005+00:002020-11-25T00:49:57.903+00:00For today, I burn.<p>I'm laying alongside my son watching him sleep. That need for a bedtime cuddle hasn't waned eight years on. That's ok. In his own time, in all things.</p><p>Today it only took some five minutes until his breathing slowed to that comfortable long term rhythm, that one I can trust to allow me to spend time as me. Doing me things. Not looking after someone else. That is a gift I have to steal, to survive the guilt of not mothering someone, and doing something outside what I need, let alone want, to be doing.</p><p>Steady rise and fall of his chest and my thoughts along with it, rising and falling. The joy and the pride in having a child who is hands down the most wonderful human being I have ever known. That subsequent fall to know that mine is a life I will now forever spend fighting for him, fending off those who would belittle, discard, ignore, pity.</p><p>Fools rush in.</p><p>I wept again today thinking of how tragic it is that this beautiful, kind, gentle soul will be forever treated like shit by society. He does nothing but love. So few people give back what he deserves. I know what he brings out of people. I've seen it. </p><p>I've seen it a lot.</p><p>It's quite something to see a face light up when they catch his attention and his heart, the light of his soul shining all around him, like a visible aura, that if you were fortunate enough to dip your toe inside it would seep straight on in to you, to light up your days until your dying breath.</p><p>If we all could be so lucky. The lucky few, indeed.</p><p>I live with this child. I made this child. The pride! You have no idea.</p><p>But lately tears coming fast and furious at the ease in which society would turn him off into the wilderness of 'things we don't care about' - God forbid when he is old - and if he had poor health atop that third number 21, (which thank God he doesn't for now) that 3/21 - blasted thing which has 'othered' this remarkable person since he was conceived.</p><p>What a true tragedy that people cannot see past physical features. What a true tragedy that people cannot wait and see what a human being is like, who he becomes, before judging him? And who are we to judge anyone, anything but ourselves? We've no right.</p><p>The outright arrogance.</p><p>I wouldn't have judged anyone before this boy came into my life, but now, yes. Yes I judge. I judge because to some folks that 3/21 combination is so hideous and so aggrieving they'd shrink back in horror and grimace and do anything in their power to avoid welcoming someone like my son into their life. I know they're out there. I know, because I've seen them flinch just looking at him.</p><p>Imagine that. Imagine your heartbreak. Your rage. </p><p>"How very DARE you?" You say this. This mantra. Some days it's all you can do to not start swinging.</p><p>How?</p><p>You want to tell those people who shrink back to open their hearts to something different - to a journey that they didn't expect, something that would be difficult, yes, but slower. Somehow cleansing. They don't even see you, let alone hear.</p><p>All this, yet my son has only barely begun to scrub the ableism from my thinking. As I live and breathe it's nearly 9 years of him on this earth and still I don't get it. Still have discomfort around people with that same 3/21 (how funny that is a countdown now I'm thinking of it) counting us down to what? Humanity? Truth? Acceptance?</p><p>Fuck this. Really. Fuck it all.</p><p>His chest up and down, and I'm watching him, adoring him. The way he looks just like that last scan when I saw his nose and cheeks on some grainy printout and thought 'whatever the heft of the sword I must wield, I will swing it wide and true with you in my thoughts'. The battle since conception rages. And rages. And I rage along with it. It's not letting up, this anger.</p><p>At least I have a tribe now. There's that.</p><p>That stupid television programme and it's insolent, obstinate, obtuse production team believing - either for the party line or in an effort to make themselves feel better about being so outright heinous - copy/pasting their responses to everyone, claiming that it is their 'duty' (of all things!) to show a story line that reflects 'one of life's truths'. That truth that most people whose fetus has an antenatal diagnosis of Down syndrome will terminate the pregnancy. Because of a ghost.</p><p>But not really.</p><p>They terminate because they want a baby. But not one like THAT.</p><p>Fact.</p><p>Truth hurts, but it's 2020 and that, friends and neighbours, is where we are.</p><p>Truth hurts, but here's another truth - they have no duty but to the almighty pound. </p><p>And another - they are so disgusting and inconsiderate to the awfulness of what they are doing, they stretch a storyline that throws our kind, gentle, beautiful children into the abyss...</p><p>...over Christmas.</p><p>For ad revenue.</p><p>That is most certainly NOT what Jesus would do.</p><p>Back to those swell folk who don't want a kid like mine. I know this because I felt like that before we conceived my son. Before I knew any better. Before I had actually ever spent a single meaningful moment in the company of a human being with Down's syndrome.</p><p>That feeling lessened when I knew he was coming, yet still I was in denial. I didn't believe he'd have Ds, I didn't want him to have Ds, no way, not us, not him, no no no.</p><p>But he did. He does. He always will. 1:119. It could be something, it could be nothing. Upslanting palpebral fissures. Sandal toe gap. Echogenic focus. I'm sorry but...</p><p>How can words be so ugly when a person is so beautiful?</p><p>And I ask myself today, what the everloving HELL was I so afraid of?</p><p>To paraphrase something I read in a piece published in The Atlantic recently, when health care professionals build entire careers on the back of their intellect, it is little wonder they feel a certain way about human beings born with an inherent lesser intellectual ability.</p><p>That is near on everything and has shaken my entire approach to advocacy.</p><p>Few will come round. Not those who believe that looks are everything. Or earning potential is everything. But especially those who feel that intellect is everything.</p><p>But here's the rub - it's plainly not. </p><p>There are countless others who build careers on the back of how they care for people. They are the lowest paid members of society. They are the carers, the religious leaders. They volunteer to work in war zones for the UN. They clean up after raging hurricanes decimate third world countries, tidying things up with paper towels instead of launching them into faceless crowds like footballs for a cheap laugh.</p><p>These are my son's people. They are considerably on the fringes in the mind of society but they are actually the skin holding the body of society together, so that the blood and the veins and the guts don't pour out into the sea and drain into the earth's magma never to be seen or heard from again.</p><p>Those are my son's people.</p><p>This argument against allowing people like my son to even exist, it's fucking old, let me tell you. He's going on nine and it may as well be 89. I'm so tired.</p><p>Watching my son sleeping, I was also thinking about how if I had any other child in any other level of this ridiculous plane of existence, I would say 'jeez, I'm exhausted, what a hard day I had today'. And the other mum I'd be speaking to would probably do a bit of subversion, some one-upmanship to illustrate that she in fact was the more knackered of the pair of us. </p><p>But here, in the magical world of 3/21, I dare not say such things. </p><p>I dare not say such things because there is tutting. There is a hidden whisper behind the back of a hand saying 'well why did you HAVE him then? What did you expect? Surely they TOLD you what a mess your life would become...'</p><p>But it's not a mess because of my son. He is the only part of this life that is absolutely tidy. </p><p>There is overwhelming societal disdain, whereby instead of deciphering my exhaustion into 'you're a mum - you are meant to be shattered' there is 'I told you so'. Because my kid is DISABLED - there will forever be an unwritten, unspoken, didactic stating that his life has no value. That his mere existence is somehow destroying my own.</p><p>That is patently untrue.</p><p>What the truth is, is that I am a mum. I am meant to be shattered.</p><p>What the truth also is, is that I am shattered because this sword is too fucking heavy and I'm tired of swinging it. But I'll swing it.</p><p>I'll bloody swing it, alright.</p><p>____</p><p>It is important to note, somehow now more than ever before, that this argument for or against certain degrees of choice, timelines in which one could end a pregnancy, or whether they should in fact be allowed to end a pregnancy at all, etc., would force a human being firmly into the category of 'pro-life'. Most people discard the feelings of and challenges to the status quo from mothers like me because they immediately assume that because I 'actually!gave!birth!to!a!disabled!child!' I am rabidly pro-life and as such, anti-choice.</p><p>They could not be more wrong. I am anti-discrimination. End of.</p><p>But it needs to be said (and I expect this will change some opinions of me, and so be it, as I'm beyond worrying about much outside matters of my immediate family in this hideous day and age) I too made a choice thirty years ago, not because I'd have had a disabled child but because I was a selfish young girl who didn't want my life to be disrupted by any child at all. I ended a pregnancy at 19. A few friends know all about it. You know who you are.</p><p>I have owned my choice for more of my life than there had been prior to taking it. It was hideous, and tragic, and sad, and a desperate emotional loss. </p><p>But not ever would I suggest I lost that child. I dare not ever be so ridiculously selfish to disrespect those women who have endured actual, true loss by appropriating the language of loss, having consciously chosen to take that path. </p><p>I made a choice. That's entirely on me. I have owned my own choice for thirty years.</p><p>This is why I get so angry that these selfish fools are running around waving their hashtags through the air about breaking the silence. You want to break some silence, let's dance. Let's get fucking LOUD, sis. You've no idea what silence looks like until your kid gets shunted into a corner by the society who doesn't want him in it merely because he has a condition they want to eliminate.</p><p>(They want a baby but not one like THAT.)</p><p>And he won't be silenced. None of us will.</p><p>So break this.</p><p>This is why I've been raging. And weeping. And seething. And running, and running, and running.</p><p>Remember that, next time you see some stupid ignorant woman crying and wringing her hands that she 'lost a baby to Down's syndrome' when the reality is that she's just made a choice to end a pregnancy because she wanted a baby...</p><p>(But not one like THAT.)</p><p>It didn't take me 38 weeks to make my choice. Nor should it take any other human being 38 weeks to make theirs. As my mother says, with regard to taking a decision and not dawdling around on the fence - 'shit or get off the pot'.</p><p>It disgusts me that women will choose based upon disability but as I've said elsewhere if you really don't want a disabled kid I don't want you to have a disabled kid. That kid would have an absolutely terrible life with you as his/her mum.</p><p>Yes there's adoption, but that's not the sword I'm holding. There is another warrior who would die on that battlefield but it ain't me.</p><p>Down the choice timeline, equality is everything and if you are pro-choice but aren't in support of levelling the timeline across the board to 24 weeks, or up to 'unassisted viability outside the womb', then we are on different channels and you should take the last train to Clarksville. </p><p>If you're pro-life and reading this, I respect your choice to feel that way. That too, is choice.</p><p>If you think disabled lives matter less, please just go now.</p><p>To choose or not to choose, that is the question. The answer, in my life has been yes, and no.</p><p>My son is my world. My choice is my history. </p><p>My words are my voice and my voice is my soul. My soul is presently on fire. </p><p>I'm not sure when it'll go out so for today, I burn.</p><p><br /></p><span><a name='more'></a></span><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR105ydWoQYmejkzSKNsrvL2s9KpShFnbxdMux1UlFzBctlNR6LtBGJpqfhho0CyjSzl-aX3fP8VGtRRRzcF5mr8vObJrip94VnzaDmfpY1Ro-chv5-ziOzpFACutVtXtNl68lScI7Vbdo/s637/Rukai.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="637" data-original-width="632" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR105ydWoQYmejkzSKNsrvL2s9KpShFnbxdMux1UlFzBctlNR6LtBGJpqfhho0CyjSzl-aX3fP8VGtRRRzcF5mr8vObJrip94VnzaDmfpY1Ro-chv5-ziOzpFACutVtXtNl68lScI7Vbdo/s320/Rukai.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div>Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-69413931020349787112020-09-20T12:07:00.003+01:002020-09-20T12:07:27.979+01:00Through it all, we keep moving.<p>Some crazy year, this 2020.</p><p>I'm sat here looking at a blank white screen, admiring the silence of it, the truth of it, the possibility of it. It's one of the few things I can control in a world that's completely slid off its axis. You'd have to be a cartoon character, a fictional superhero, above and beyond all that is natural to not be desperately affected by this year. But the question that matters - the only thing that matters - is what are you doing about it?</p><p>Is there a point in looking back? In wrapping your brain around the things that have steered us into this day? Always. More often than not it hurts, but this hurt I am looking at is so positive in terms of what I have gained from it. A year starting with tenuous employment in a temporary role, finding renewed belief in myself and my truth. Speaking it to find support navigating my way into a next role that's completely reminded me I am genuine. My truth is not everyone's truth. I dance to my own drum. All I had to do was find the rest of the band. And that has added sparkle.</p><p>That awful lockdown, that gut-wrenching fear, that all consuming need for self preservation came in the midst of it all. We circled the collective wagons as a family, a community, a nation, a global population. In these (dare I use the overused) unprecedented times, there we set our own precedent. The one that looked back to Maslow's hierarchy and calmly stated 'you know what you need to do. Go do it.' And so we were home. For a long long long time.</p><p>Funny for our family home has never been a prison, more of a place of refuge. To close that door to the outside world and get our game in order. Much of it completely screaming down an imaginary slope, eventually launching us into the atmosphere of panic, and worry, and anger, and fury and all those negative adjectives we try not to use if we mean to keep a positive outlook. I am only positive we kept an outlook because there is no other way to respond to change than to look ahead of it and go after the place in which you want to arrive when you manage to break out of the storm.</p><p>The storm raged. No education for our son at home because mum doesn't do school, mum plays and throws him in the air and plays ball and had no extensive input from school to deliver. That's been discussed and addressed and we are moving ahead now. That storm is a drizzle and we have the wellies on and brollies up and the team I thought was there really is. In the absence of the 70+ hour a week work rollercoaster to distract me from my number one, I am on it. And on it and on it. To that exit door we move and we'll get into the sun once again.</p><p>All the while, the ship of fools running this crazy world around us, failing to protect us all, failing to instruct us all, failing to support us all. The problem with politicians is they are people. They are human. And human beings are not faultless and are not flawless. People screw up. The trouble is we have to elect some of them. Choose badly and the shit is going to hit that fan and we'll be scraping it off for generations. I need not elaborate on the current state of affairs then. Go get in the shower. With a chisel. It's going to be a long time before you'll be clean again.</p><p>Me, I'd rather be caked in actual mud. Fortunately the global catastrophe delivered one particularly amazing gift in the sense that I had to do everything I could possibly do to avoid coming into contact with other people. But how do I run when there are so many people around? Because for me, if I don't run, I die a little inside every day. This is where I'm at with the sport. I run for freedom. I run for head space. I run for self actualisation. I run for pride in accomplishing something. I run to be able to have one small thing in life in which I can control every variable. Even when injury or pain comes in, I can decide what to do about it. I can take the action or I can sit still. I know which I'd choose until I'm six feet in the ground (or dust in a jar, or bony sand in the bottom of the sea). I certainly don't run for exercise. I don't run to lose weight. I don't run to look good. That said, these are all quite pleasant side effects. I certainly don't run to race other people. Life provides enough competition that I don't really need to add any more thankyouverymuch.</p><p>I looked on a map of some of my local running routes early on in the lockdown to see where I could go that was less people-y and soon found myself in another world, void of contact. Little-used bridleways, quiet back roads, snaking across hilly farmlands. Safe. Socially distant. It occurred to me over lockdown that I genuinely prefer social distancing. I'm not by nature a social person and deep down don't particularly care for the company of people. And that's ok. Me, I want to hang out with the wind screaming in my ears, reddening up my face, blowing my hair out of the elastic band. Me and the sky have a fantastic relationship, even when she is crying. Water that ground beneath me to mud, sis. Splatter it up the back of my legs, trip me up and pull me down into the long grasses, that is the only way I truly feel alive. While society was dying, I was living. I found a way to live after all. </p><p>On the cusp of a second national lockdown of sorts, I am not afraid of what that means because I am generally on lockdown anyway. It's a bit of a meh. I consider myself extremely fortunate to have that outlook. I also consider myself fortunate that my son is content with me out running, but also that he takes great interest in me out running. Who are you inspiring? This is everything. We will run together some day. I cannot bloody wait.</p><p>During the time frame between 1 May and 31 August I took the opportunity to sustain my sanity and realise some form of achievement by attempting to move myself forward 1000 miles as part of Lazarus Lake's Great Virtual Race Across Tennessee. It's a ludicrous distance for someone who normally runs and walks an average of 100 miles a month unless I'm training for something huge to up that monthly distance by 150%. But there wasn't much else going on, and there were those magic, new, tucked away, people-free routes. I pushed myself hard. I achieved something absolutely epic. In this year when life has been shaken to its core, and normality has been cancelled, I went out and kicked its ass. It's all I could do when time had come to a halt. It's all I could do to attempt to get the world turning again, to move along it's centre line (quite actually - some of my regular route was along the Greenwich Meridian Trail) and hope the momentum under me would help give it a push. When we feel most helpless it's only natural to find something to give. Even if it's just to ourselves. The pride I feel in this achievement is nothing compared to the gift that achievement has given me where it counts. I am so much stronger in the mind. In the heart. </p><p>Despite the fact that 2021 will usher in 50, this is not a mid-life crisis. What it really is, is self-actualisation. There's old Maslow again. Bit out of order, but...2020.</p><p>2020.</p><p>There is not the slightest indication as to what will happen next this year. Frankly I don't want to know. Like Tom Hanks in Castaway said we have to just keep breathing. Like Nemo has to just keep swimming. We too need to just keep moving. Forward. Relentlessly. </p><p>I've got a real, socially-distanced marathon coming up next month. I do hope it stays on because it takes me over one of my loves, the Seven Sisters on the south coast. Those blissful challenges before me, spending hours virtually alone with my thoughts, climbing up and careening down. Looking to one side to take in the rise and fall of the glorious countryside. Green entwined with full autumn brilliance. Maybe shining with sun, or belting with rain. To the other side, the sea kisses that mysterious line across the sky which whispers, taunts: 'you'll have to come this far if you mean to see what's further.' My friend the wind, pushing me back, pulling me forward, delivering its roar to my ears and its red to my face. </p><p>Through it all, we keep moving. However we do it. Whatever it takes.</p><p>No fear. Keep moving.</p><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM5_-jdWNajBav4ioAZ3naHxGbpkbsbcdXbfzGafJx3Q9LauwazxTl_yoyfgwM0bcfLUS_jRVSuCSR8US5N63W7ZWR3ao9dxddbzs0sDRC8dxpdP_Zor_U3kFBpzoodgWbn1EQRtZ_GOS1/s2048/IMG_20200831_132926984.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM5_-jdWNajBav4ioAZ3naHxGbpkbsbcdXbfzGafJx3Q9LauwazxTl_yoyfgwM0bcfLUS_jRVSuCSR8US5N63W7ZWR3ao9dxddbzs0sDRC8dxpdP_Zor_U3kFBpzoodgWbn1EQRtZ_GOS1/w640-h480/IMG_20200831_132926984.jpg" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p><br /></p>Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-14976900593060982102019-07-02T17:23:00.004+01:002019-07-02T17:23:43.672+01:00Trailblazing.It's one thing to take a look at a personal situation and say 'No, I'm not going to accept that...'<br />
<br />
It's quite another to finish the thought with '...and neither should anyone else.'<br />
<br />
I ran a Google search this morning in search of a definition for the term 'trailblazer': a person who makes a new track through wild country.<br />
<br />
Appropriately, when the trail you wish you blaze is a literal trail, you sign up for a 100 k race and train until you're ready to blaze. Me, I'm going to burn up some terrain in just under two weeks' time. Yes, of course I'm doing it for me, but it occurred to me the other day that I also want to do it for my Rukai. And to do that, I need to pass on some really important information.<br />
<br />
(If you're still with me, thanks.)<br />
<br />
Trailblazing. New tracks. Wild country.<br />
<br />
How wild is the trail that navigates through the lost world of medical misinformation about possibility when it comes to disability? What if the trail about which I'm writing is one bordered in thorny opinion, cobbled with unforeseen pitfalls? What if it's always been unmarked and unnoticed?<br />
<br />
What if one important day, someone said 'I'm not going to accept that' and began to map out that journey?<br />
<br />
The result: Positive About Down Syndrome (PADS) - an online community written by families for families which has set out to draw back the curtain and expose the true wizard of Down syndrome - by sharing stories from that strange and amazing place called 'Lived Experience' which has eluded most professionals for decades merely by omission from the literature.<br />
<br />
Leaflets full of facts and figures and symptoms and medical prognoses were thrust in my hands when Rukai was born. The folk wearing stethoscopes may have thought I was well equipped for the journey. But theory does not laugh. Statistics don't dance. Paper doesn't hug. Truth matters. The whole truth and nothing but...<br />
<br />
I've no idea if I've written of this before but it matters here: I shudder to think what may have happened in our lives had I known before Rukai was born that he would have been born with Down syndrome, largely due to the total imbalance of the information available to me at the time. I live with that knowledge every day and it's wrapped a piece of my heart in those thorns. But I know that in retrospect, had I been given full and balanced information back in the day, if society weren't so pathetically misguided about the realities of life for someone with Ds, my personal picture would look dramatically different. That fear, nothing more than a blip on the radar. But it scarred. I simply don't want that to happen to anyone anymore.<br />
<br />
I've written for years about my Rukai's possibility and have always tried so hard to not let the negativity in the ether bring us down. Nicola Enoch and that group of amazing PADS advocates have taken this to another level. Down that new track, through that wild country. Blazing, blazing.<br />
<br />
What I wanted when Rukai was born is what I imagine what everyone would want at such a worrying time - someone to tell me it's not a disaster. Life is different, but life is fun. Life can be challenging but everyone's life is challenging. Life is life, and we are most certainly ALIVE.<br />
<br />
I feel most alive when I'm blazing those forested and mountain trails.<br />
<br />
PADS is blazing that other trail, giving life and hope and positivity to people just like us. People who should not be coerced into fearing the unknown.<br />
<br />
But the website is only the tip of the iceberg and there is yet to be much more amazing work to come, so here's my ask:<br />
<br />
Take a look at the website and read other lived experience from families who are also feeling Positive About Down Syndrome.<br />
<br />
Check in with me on the weekend of July 13-14 when I'm running the Action Challenge Peak District 100k, when I'll be live streaming updates from the run when I have a signal, and sharing a few bits and bobs about exactly what else Nicola and everyone at PADS are achieving as they blaze this trail.<br />
<br />
Consider making a small donation to their crowdfunding page (<a href="https://tinyurl.com/y4er87ja">https://tinyurl.com/y4er87ja</a>) so they can fund more projects like getting the language about Ds changed on websites like Bounty and the NCT, getting leaflets into hospitals so families like ours can go forth and blaze their own trails.<br />
<br />
If you can't afford to donate, please share the website (<a href="http://www.positiveaboutdownsyndrome.co.uk/">http://www.positiveaboutdownsyndrome.co.uk/</a>) or this post in full. Awareness is everything.<br />
<br />
Burn baby burn.<br />
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<br />Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-33569339219482359442019-06-12T21:29:00.003+01:002019-06-13T11:48:01.385+01:00Faster now.How do I write when I can't think? The stuff I want to say is like that pile of crap underneath my bed as a kid, shunted there by a flurry of hands when Mom told me to clean up, retrieved later by a hockey stick when I was found out. I hadn't the patience and the ordered thought to clear it at the onset, how the hell could I do it now?<br />
<br />
That elephant has taken too many bites to eat. I am full. I have indigestion. I fucking hate elephant.<br />
<br />
I have used an analogy to describe what it has felt like of late to be at work, there in the midst of this life which surrounds that work, and that is where I will start and perhaps pause again. Because in all desperation, you have to start somewhere. Every journey starts with a single step, every story with a word. Every finish with exhaustion. If you are not exhausted you have not done enough.<br />
<br />
But my good God I'm tired of this story. There I said it.<br />
<br />
Imagine you are an expert skier, positioned atop the highest, most technical mountain going. Perfect clear weather, great snow conditions, you strap on your left ski and smirk at the prospects of attacking the latest challenge set before you. Crouched down, you position your foot into the right ski and just as you begin to secure it, a boot at your back sends you hurtling down the mountain.<br />
<br />
You are flailing and slightly panicked, but the snow is in front, the boot is behind and you are only trying to not crash and burn. Your goal is to survive. <br />
<br />
That is all.<br />
<br />
Still, you are an expert skier. You know how to attack this hill. Even when the hill is attacking you. Crouch. Steer. Focus.<br />
<br />
Conditions have become less than ideal and you are careening and flailing and panicking but lo and behold, you keep skiing.<br />
<br />
You keep skiing. You keep skiing so long you start to hate skiing.<br />
<br />
Somewhere in the middle of the hill, you hit a dodgy edge and fly head over heels, skis launched into oblivion despite how secure or insecure they really are, and you crash into that orange plastic net fence so hard it leaves a bruise with a fair bit of depth. As you creak to vertical, observers applaud that you are, in fact, not dead, which doesn't matter a bit when you drop your head so far below your shoulders you obliterate those delicate muscles in the neck that allow you to hold it high.<br />
<br />
It will be days before you can. Months? Years?<br />
<br />
Not soon.<br />
<br />
You skulk down, down, down. To the base of the hill. Dragging the skis and your courage behind you.<br />
<br />
And then you look up. Beyond the fence, up.<br />
<br />
Past the crashing place, up.<br />
<br />
Beyond the clouds, up.<br />
<br />
Because the beginning of the bad run is not visible to the eye, it is fogged in and buried in mist and roiling and blowing and you won't see the same again until the next time you fall.<br />
<br />
Because you will fall.<br />
<br />
But.<br />
<br />
You massage your bruise. Your bruised ego. Your bruised psyche. As purple fades, resilience falters.<br />
<br />
But.<br />
<br />
Relentlessness does not die. Faith is genetic, impenetrable.<br />
<br />
The echo in your head is part crowd, part disappointment, part mind egging you on to try again.<br />
<br />
Mind wins. You go back up.<br />
<br />
Faster now.<br />
<br />
The mountain is high. You go back up.<br />
Faster now.<br />
The conditions are variable. You go back up.<br />
Faster now.<br />
The ski is never secured properly.<br />
<br />
Still, you go back up.<br />
<br />
Faster now.<br />
<br />
You go. Because that is what you do.<br />
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<br />Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-74957985470774896432019-04-03T10:39:00.001+01:002019-04-03T16:10:41.480+01:00The child for whom I was so afraid.<div class="" data-block="true" data-editor="3s1rt" data-offset-key="3ovj-0-0" style="background-color: white;">
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<span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px; white-space: pre-wrap;">If you are the new parent of a child with Down's syndrome and are worried about how he or she will be accepted in this life, I want to tell you a little story...
My son Rukai is now 7 and in year 2 of a mainstream primary school. He's non-verbal and has his challenges but is mighty capable with Makaton. So is his TA. The school is generous with inclusivity and encourages all the children to learn at least a few signs. They sign every year in the Nativity. They celebrate World Down Syndrome Day. We are lucky we found them and ever so grateful for the advocates and activists who've paved the way for society to get this far. Every little helps and you have all been warriors of a different class to fight your way through the mire.
Each Wednesday morning is reading morning at the school. Fortunately I work from home so rarely miss it. Rukai lost interest in books once his mobility improved enough to allow him to dance and has only recently has decided that he loves Dr. Seuss' Green Eggs and Ham, so that's become a nightly treat to my great delight. It's more theatrics than reading but we are working very hard on pronunciation and have a whale of a time together. Progress is slow but progress is progress.
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<span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px; white-space: pre-wrap;">A few weeks ago Rukai's TA was telling me how the children have been enjoying sitting with him to read a story called The Old Tree Stump. It's a Biff, Chip and Kipper book (common here in the UK, if you're unfamiliar), and full of many sign-able words, so a real winner of a story.
Sure enough about a month ago one of the little girls who reads with him during the school day brought out the book and told me again how much he likes it. Next thing I knew there were about 4 others who took a seat and joined us. Laughing away, signing with glee, loving the story and time with my son.
That child for whom I was so afraid, just like you may be feeling right now.
Today the crowd around Rukai - totally engaged and gleefully signing its way through that book - had to have grown to at least 10. It was standing room only around the desk. There were even a few boys this morning. It was something I thought I'd never see those seven years ago. Sure, life has since hinted that this is the true way forward, but a cold hospital room on a blustery February morning, staring down an unknown journey are most certainly the bogeyman. And we know the bogeyman is not real.
But what is?
Hope is real. Progress is real. Friendship is real. Curiosity is real. Children are malleable and the future is real. Don't be afraid of the world, help the world lose its fear. Go be amazing. Your child will be amazing, this is all I know for sure. There is no crystal ball, there is just you and them and one single day at a time.
As I looked up at all those kids this morning I laughed and smiled 'this is a reading party today!' and the response I got back from one of the children rang so loudly and beautifully in my ears:
'Rukai has a lot of friends!'
Yes. Yes he does.
Life.</span></span></div>
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Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-10691195738715607072019-03-26T15:42:00.003+00:002019-03-26T21:56:47.925+00:00The height of the mountain we climb.Long day’s work done, I step into the tube station.<br />
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Tall guy with a crutch and an uneven gait passes through the disabled ticket machine. I notice because I always notice now, then keep going to board the train.<br />
<br />
Up ahead a woman in a white top is stood up next to her seat, swaying slightly, muttering to herself. She’s grasped the bottom hem of her top with the tips of her fingers. I walk by with a glance and move forward.<br />
<br />
I always notice now.<br />
<br />
Guy with the crutch boards shortly thereafter. He’s tall, wearing glasses, I can see that one of his eyes is focusing entirely to the side. None of this is terrifically important or memorable until he stops immediately in front of me and starts shouting back down the carriage. I can’t hear what he’s saying over my headphones, so press mute.<br />
<br />
“…you can’t expose yourself here! There are children here! What the hell…”<br />
<br />
I look back in the direction from which I came and the woman who’d been muttering has pulled off her top and is now stood in her bra and skirt. She slowly tugs another top on and resumes the zoned out swaying. I don’t think she’s all present but this is London, this is not all that uncommon. I don’t pay much notice but the man in front of me is now gawping at her, and starts muttering aloud until I hear “…ah now I feel bad for her…” and off he goes to grab the attention of a train employee.<br />
<br />
She’s still swaying.<br />
<br />
Employee steps on the train, as the woman now turns away and saunters down the carriage in the opposite direction, leaving her bag on the seat.<br />
<br />
Alarms ringing in my head now, you don’t do that shit on a tube these days. Should I stay or should I go. I sit frozen for a minute and decide I don’t believe she’s dangerous but also that I don’t want to be close enough to wake up in a hospital knowing how wrong I was. I move down the train and sit behind a few barriers…you know, in case something explodes.<br />
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This is London. I hate living with that background fear.<br />
<br />
Back to the man who alerted the staff member – now he comes by and starts talking to me about how he’s never seen anything like that on a train.<br />
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“I’m gonna have a seat…”<br />
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“I’ve never seen anything like it either,” says I.<br />
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Dude’s now talking about how unfair it is that society lets people suffer with mental issues, and he glances over “…she’s clearly got something wrong,” he says. “Why don’t they fix problems like that? If there’s something wrong with someone’s brain, why don’t they scan the brain, find what is wrong and fix the problem…”<br />
<br />
He’s going on and I’m liking the conversation. The injustice for atypical people is apparent every day for me now and it’s surprisingly pleasant to engage in a conversation about it with a total stranger. My thinking is different, my situation is different. I care for someone who will forever suffer from injustice. I like this guy. I’m very much in the moment until out of his mouth comes:<br />
<br />
<i>“…why don’t they just fix it instead of letting them just mong out...”</i><br />
<br />
…<br />
…<br />
<br />
(I hear nothing but red noise in my head. It may well have been an explosion because there was nothing but red noise in my head.)<br />
<br />
This guy is <i>disabled</i>.<br />
<br />
This guy will have been the focus of those dreadful disdainful attitudes, thrown away, uncared for at a glance of that crutch, those glasses. I would imagine that probably on this very day he’s been treated badly by someone and there and then out he comes with…<br />
<br />
<i>“…letting them just mong out…”</i><br />
<br />
Has he forgotten his own situation? Does shit roll that far downhill that there is nothing left to do but roll it further? Find an underdog society views even more…<i>under</i>? No. Not today, man. No.<br />
<br />
This man dug up that word and I stopped listening. That disabled man is no ally of my son. That man threw my son under the broken bus. I probably should have called him on it but it was late. I was on the train. And I was in total shock.<br />
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I expect this attitude from the uneducated bulk of society in general but to hear it from someone who I try to fight for every. stupid. day…<br />
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I don’t know what to feel but rage, nor what to see but the height of the mountain we climb. It’s fucking huge.<br />
<br />
This is what we are up against.<br />
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Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-16980255949407469962019-03-21T06:47:00.000+00:002019-03-21T06:47:02.198+00:00These two are not the same. | World Down Syndrome Day 2019<div dir="ltr">
Mismatched socks are ok. </div>
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Total inclusion is better.</div>
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Lack of a battle to help your child live his best life, lack of societal disregard to a person's humanity.</div>
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Medical professionals ceasing to say things like "I'm sorry" and writing things like "Problems: Down's syndrome" at the top of every report.</div>
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I have a son. I have a problem. These two are not the same.</div>
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Today is World Down Syndrome Day for everyone. In our house it's every day.</div>
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Socks are fine but they don't stop science trying to eradicate my son's community. They don't prevent people from making foolish assumptions and slapping on labels. Head tilts and low expectations. Only real life knowledge does that.</div>
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Socks are great.</div>
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My son is greater.</div>
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The world can be as aware of Down syndrome as it likes. But it is high time the world stops trying to eradicate it and pays more attention to welcoming people to life. To learning what the realities in that life are.</div>
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Our life can be difficult. But it really has little to do with Down syndrome.</div>
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Today I celebrate my son. I advocate for my son. I try to educate people about my son. But I do that every day.</div>
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Today is for all of you to do the same.</div>
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Happy World Down Syndrome Day.</div>
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<span style="background-color: #d8dfea;">#wdsd2019</span> <span style="background-color: #d8dfea;">#Team21</span> <span style="background-color: #d8dfea;">#downsyndrome</span></div>
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Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-26730402464841083502018-12-31T17:55:00.002+00:002018-12-31T19:12:08.875+00:00If Carlsberg made years...The title of this blog came to me as I was rounding a turn I'd taken on about 25 of the past 31 days, during yet another run, somewhere just past the twelve minute mark. I was watching the cars pass to my right, now a rabbit scampering up into the Town Mead, now my feet, and I look up in time to see a Carlsberg truck passing overhead on the M25.<br />
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Indeed, I thought. If Carlsberg made years...<br />
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Then too, this wasn't to be an ordinary year from the off. That said, I'd not have been terrifically disappointed if I'd have had half the success, because for me the success is really in the trying - or better still, in having the courage to persevere when the going gets ludicrous. To flip the doubters the bird, press shoulders back, even when I'm limping, and go forth to Buzz. I've never buzzed louder than this year and it's been absolutely magic.<br />
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There I was at the start of 2018, asking myself 'What would you do if you weren't afraid?'<br />
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2018, mate. 2018.<br />
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The pinnacle of this year: being honoured by my running tribe with the title Realbuzz Performance of the Year, <a href="https://www.realbuzz.com/blogs/posts/1460415/realbuzz-performance-of-the-year-2018results" target="_blank">coming atop a list of performances I am nowhere near delivering</a>, yet still they thought of me. Every time I ask why, my eyes well up again.<br />
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I am so proud of that glorious 5:29:08 - a 21 minute PB - at the Chicago marathon (coincidence really IS cancelled) finding its way into their hearts. My good heavens, that was king catalyst amongst all things ever to touch my life and has put the mantra in my head that I must now <i>earn</i> it. I told myself on yesterday's day 30 of the month long Marcothon challenge that if my performance was a champion then I must now run like a champion. And there I only went and for the first time in my life clocked a sub-30 minute 5k. With...wait for it...21 seconds to spare.<br />
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21. 21. 21.<br />
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It's that trisomy that's changed our family's course forever. It's a talisman, and it really seems no coincidence that these 21s have found their way into the other side of my life in 2018.<br />
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It remains my duty to prove to the world - in any way I can - that slow is not broken. It is my duty to be a role model to my son. I have to be the best me I can be, and I thank everyone who's ever given me an 'atta girl' for anything I've done, as you've helped me find who that 'best me' is.<br />
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And so goes the personal annual, for posterity's sake...<br />
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In 2018, I found trails. I fought my way through injury to finish a half marathon in front of the pacer for the first time in March. I hobbled home in Brighton on a broken shoe with unbroken pride in April, walked the South Coast for marathon 5 in May before summiting Scafell Pike and putting a demon to rest once and for all. June's Realbuzz gathering down Hawkesbury way got me a 5k without stopping beside the powerhouse known as Libby and so went the bit between my teeth. More please. More.<br />
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July - oh JULY! Ultra Yve, Ultra Bev, Ultra Max and the magic Buzzer baton tromped across that roasting chalky Race to the Stones Ridgeway, supported by the magic pinging from the messenger thread and the world class sock retrieval service by our Tony, blistered toes were nothing for the pride that followed. I left a mere job to start work with a <i>purpose</i>. I spoke at the World Down Syndrome Congress. <a href="https://www.facebook.com/downinfrontplease/videos/1356010927865609/" target="_blank">Our little family video of truth</a> went a little bit viral. I summitted Scafell Pike again, because I <i>could</i>. Just for shits and giggles.<br />
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Tiger Mom roared. Rukai soared.<br />
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July was triumphant. July was painful. July was conflicting. My heart was so tired of defending disability. Of explaining why my son has a right to exist.<br />
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So rather than beat my head against the wall, I ran some more.<br />
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On to August, 35 miles and four hours off that 50k time with my Iron friend Kate. The South Coast Challenge didn't even leave a mark, and now - NOW - I'm feeling it. Mad Max? The woman, not the mum, not the campaigner, not the employee, not daughter, wife, sister in law, cousin, enemy, none of these. Mad Max came back in August.<br />
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I <i>think </i>I may have rested in September. Couple days and back in the gym. And then came Chicago.<br />
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I went home alone. I visited my Dad's grave, I passed all the sites I needed to see, I saw the original tribe, I stayed off my feet, I ate all the pizza in town, I foam rolled into oblivion, and then I went out with an old friend and truly enjoyed a marathon for the first time in my life. Triumph. Bliss. This is what I came for. And got my medal from The Paula. Come ON. Carlsberg year. All day long.<br />
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Snowdonia. Day before my birthday. Gathering of the tribe and off we went round that mighty mountain. Some were so fast, some were not. We were near the back and griped our way around grins. Me and the super Swede, doing a super Snowdon. And there, then, I thought it was over.<br />
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Not quite. Chairman Jim aka Gloshawk and his gauntlet of the mysterious Marcothon. Run 25 minutes or 3 miles every day in December.<br />
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I may be tired but I'm a Buzzer.<br />
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I ran. I got to day 30 and smashed that PB, and cried and couldn't even see straight. Day 31, finished, wrapped in a shiny box with a giant orange bow. When you are looking for the purpose in your life sometimes you have to make it happen.<br />
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So here we are. I want to tell everyone reading this that I think you are mighty and marvellous and unbeatable and legendary and all those superlatives that there isn't enough time for. Thank you for the journey. Onward we go into 2019.Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-9134376119770585332018-10-05T15:25:00.002+01:002018-10-05T15:49:43.411+01:00This is what we are up against.This week, a wonderful and effervescent young woman who is absolutely thriving, has her own flat, a job, a terrific boyfriend and is loving her live (oh and who also has Ds) had been asked to participate in a radio interview to talk about the myths around Ds. The producer also saw fit to include in the segment the head of an organisation which actively promotes prenatal testing and abortion services.<br />
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The producers believed so strongly in the myth that people with Down syndrome are just 'always happy' and lack even the most basic understanding of the world around them that they aligned these two human beings on a chat show. For ratings. It's the bloody Hunger Games.<br />
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It is typical for these types of programmes to include guests who will counterpoint one another but I ask you whether you think it's in any way acceptable to position someone - with or without a learning disability - who is prepared to talk about the positives in her world, alongside another who believes she should not even exist (and has made her feelings clear time and time again under the guise of 'choice'). It is cruel, it is inhumane, it is discriminatory and it is absolutely typical of society today. I am 100% pro-<i>informed </i>choice but when it comes to Ds, misinformation is sadly the rule and not the exception, perpetuated by professionals either too lazy to learn the truth or too biased to see the possibility of human beings who happen to be different. I'm like a broken record now but God damn it, difference is not disaster. It's just not.<br />
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False information about Ds feeds the most base level of all fears, which for women who choose the termination route after antenatal diagnosis is not that 'the child will suffer' it is that <i>they </i>will. It is from a purely selfish perspective and anyone who tells you other than that is lying. I call it out because it's actually really simple to admit the reason behind a choice you make. Most who make this choice will not admit the real reason. Perhaps they cannot actually process it, but I can assure you when the only reason for termination of a pregnancy is the probability that a child may have Ds it's not being done to spare the <i>child's </i>suffering.<br />
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There is little emotional activity I've ever experienced stronger than maternal instinct. It lands hard and it takes a galactic amount of fearmongering to crack it. But lies and myths are made of titanium and the hammer fashioned from them strikes a hell of a blow. Crack the armor and you either force the hand or provide a tailor-made excuse to take the easy exit from a 'different' future. <i>'Get rid of this one and try again.' Ah ok. Thank you for saving me. </i><br />
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This next may be distasteful for some but it is the truth, it is out there, and it infuriates me. I will not mollycoddle these people any longer because they don't give a toss about my feelings. And far less about Rukai's.<br />
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They terminate the pregnancy based on a prediction and often a whole lot of false information, and then go off to weep about and announce their sorrow around the child they 'lost to Down syndrome'. They may infuse their offloading of guilt with a '<i>Mummy loves you my darling.'</i><br />
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No. No you didn't. <b>That's the thing.</b> You didn't, because someone's fearmongering made sure of it. They took your love off you and binned it with the surgical gloves. That thing you think is love is actually <i>regret</i>.<br />
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This is what we are up against.<br />
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These people then look at families like mine and without knowing us from a bar of soap assume that our lives must be terrible and painful and sorrowful and any number of negatives, simply due to our son having Ds. But they should ask our friends at mainstream primary who would very politely inform them of their error. I've got a fair few struggles and difficulties in my life but Rukai is not one of them. Unless he's being insolent, or refusing to go to bed, or not doing his homework... Yes he's delayed in lots of things, but lo and behold there is a ready-made tool that can help me cope - it's called <i>patience</i>.<br />
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But the fact remains that pregnant women don't want a different path than they are expecting. They want to live the dream. They want to step into the parenting story they've heard of and have seen before them for years on end. And unless their world includes a child with a disabilty, that pregnancy story does NOT include delivering a child with a disability. That scares the hell out of them and makes them listen to the loudest voice in the room (hint: usually the guy in a white coat carrying a clipboard full of tick boxes). They don't want to look at the truth, so readily available. Real lives. Real people. Real stories. <a href="https://positiveaboutdownsyndrome.co.uk/" target="_blank">Like these.</a> In many cases they don't want to even see someone out in public with Ds because they are the embodiment of all those fears and misinformation. They represent the life that terrifies them. Why? Because they don't know about it. They haven't been exposed to it, learned about it, understood similarities instead of focusing on differences. Accepting the differences as variation in human existence. Nothing more. Nothing to fear. Nothing to flee.<br />
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I am so sad that I was so afraid before Rukai was born. Maybe more sad now than angry. That time can't be recovered, but I sure can remember it like it was yesterday and advise anyone who is out there feeling the same now to take those feelings and despite how afraid you are and how painful it may be to face your very deepest maternal fear - you go on and pack them safely aside and go learn a bit more. Yes, it is a primal conflict down to your very <i>marrow </i>about whether or not you think you can handle having a child with a disability. Yes it's a more challenging life than it would have been otherwise. But that love? That love is the same. That journey is of a mother and child and life behind and today and to come. It's just like any other. Don't let other people scare you into making a decision you may regret later. But if you make that decision, <i>own it.</i> Own it and know why you made it. You'll certainly have a loss but it's not actually the one you think you've had.<br />
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I didn't think I could handle it either, and to this day relieved I didn't know in advance because I could've been in those shoes of regret, never learning a bit, never knowing the difference. Never knowing this love. But our delay in conceiving saved us that regret. He was joining us no matter what. There wasn't any other choice. But it's soul destroying to think of how easily I could have lost him. It breaks me some days. Not life <i>with </i>him but imagining a life <i>without</i>.<br />
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And here I am, mother of this gift to the world, rolling onward to age 7. Bettering myself by rolling onward to marathon 8. All after he arrived. All after he made me want to be a better person. All after he gifted me with the honour of being his mum and the responsibility to pay attention and listen. To shout to the rooftops with the same honesty and sincerity he delivers every minute of every day. There is no bullshit in him nor me. I have a job to do and here I am doing it. That is all.<br />
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Should he have to fight for the right to exist? No. No, I don't think he should.<br />
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The reason Ds is targeted so fiercely is because it's so easy to identify. It's that simple.<br />
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This is what we are up against.<br />
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Rukai is not the problem in my world. THIS is.<br />
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#breakthemyths #wouldntchangeathingMaxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com2tag:blogger.com,1999:blog-195981949747094692.post-20470124383434580752018-07-28T18:19:00.000+01:002018-07-30T09:21:57.799+01:00How to create a Tiger Mom without even trying.<div class="separator" style="clear: both; text-align: left;">
I was very proud to be able to present at the <b><a href="http://wdsc2018.org.uk/" target="_blank">13th World Down Syndrome Congress</a></b> this past week in Glasgow. As anyone who's read this blog from the off already knows, we had a ridiculously rocky beginning which set me up for many years of wasted anger and frustration. It is only now after six of those years have gone that I am able to step back and see precisely where that anger began, and better still, how professionals can prevent it in the future. It is my duty as a parent and a Down Syndrome advocate to share it as widely as I can to help ensure that it doesn't happen to anyone again, so I'd ask if it reaches you on any level please share. </div>
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The more we speak out, the louder we become, and education is everything. To all you Tiger Parents out there, keep on roaring.</div>
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In unity,</div>
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Maxine </div>
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It is important to start at the beginning. And this was ours (please watch before you continue reading...)<br />
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<b><a href="https://www.facebook.com/downinfrontplease/videos/1356010927865609/" target="_blank">https://www.facebook.com/downinfrontplease/videos/1356010927865609/</a></b><br />
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Ok, got through it? Here's MY apology:<br />
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My apologies for that depressing beginning but that's precisely how our family’s beginning was – there was no advance warning, there was only emotional pain from being bombarded with so much negative noise for so long. It began from the first antenatal visit when the midwife refused my husband access to the meeting, then focused on my ‘advanced maternal age’ and with it the so-called ‘risk’ of having a child with some type of chromosomal abnormality. Add to it the likelihood of developing gestational diabetes for the duration and you can imagine how much worse things became as the time went on.<br />
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The gestational diabetes indeed reared its ugly head and during some 19 hospital appointments I was made to feel progressively more afraid that I’d inadvertently do something to hurt my son. Their total lack of bedside manner was astonishing and frightened the life out of me.<br />
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It also made me very angry, to the point I logged a complaint with the care quality commission when I was only 15 weeks pregnant. I suppose that was the precise birth of me as a Tiger Mom.<br />
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Needless to say, during a time which should have been so joyful, we were instead entombed by every possible negative emotion. I absolutely hated being pregnant and just wanted to get away from those medical professionals. The evening of the day we learned Rukai had Down’s syndrome I found myself wailing in the shower – not at the diagnosis but instead at what it meant for us as a family. I was terrified and nearly frantic that we’d never be free of that fear and intrusion.<br />
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I didn’t want to even try for another baby because I didn’t want to go through all that negativity again. And we never did. Six years on, Rukai remains an only child.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim9R4phyphenhyphenpBFveL1I31Tt28xIw7EV90pkjyV-Zsu1MtXwOqLXuXc0z0ZVuPrvDvXDCwX7BOVx4GfAG1XuOH_l3WErSnM8LdyND6pCS51K31ce0gfYkE0V52wpGeakYAm7j7eLN9tb5bMzsz/s1600/Slide6.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim9R4phyphenhyphenpBFveL1I31Tt28xIw7EV90pkjyV-Zsu1MtXwOqLXuXc0z0ZVuPrvDvXDCwX7BOVx4GfAG1XuOH_l3WErSnM8LdyND6pCS51K31ce0gfYkE0V52wpGeakYAm7j7eLN9tb5bMzsz/s640/Slide6.JPG" width="640" /></a></div>
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It’s little surprise that for years, my emotions continued to seep out from a place of deep resentment. After all, our joy had been taken from us. A happy new beginning for a first born son was lost and we’d never regain it. For a sentimental person like me, that’s awfully hard to stomach.<br />
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Two years later, we even moved towns to get away from the NHS trust we were under because of the horrendous memories. Worse still, the people who had delivered us all that emotional pain were fairly oblivious to the level of pain they were causing.<br />
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I would guess there are others reading this who can completely relate and for whom that all may have brought back painful memories. I’d say I’m sorry, but in keeping with today’s theme I’ll say ‘congratulations’ – because we are on this journey together and that is the word we all need to hear.<br />
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The language used when a child is diagnosed with Down Syndrome, either in utero or post-natal, has forever been encircled by ‘I’m sorry’ and that needs to change. It needs to change because it leaves lasting scars which deny new parents their right to enjoy the journey with their newborn child.<br />
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This is why I share our story.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHT0iMecfCygXgbDlH0kAAD6CBtbeEYT7FUE-TYhzmAB2eLCCgnd91f43smKojizVdn2tpl6JKl3ys-WZ97fjnCSXE6C8_2qgAXmwkLyTDRM8y7-M3pyhhteZrbuwR0LviBcIxXY34L_tX/s1600/Slide7.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHT0iMecfCygXgbDlH0kAAD6CBtbeEYT7FUE-TYhzmAB2eLCCgnd91f43smKojizVdn2tpl6JKl3ys-WZ97fjnCSXE6C8_2qgAXmwkLyTDRM8y7-M3pyhhteZrbuwR0LviBcIxXY34L_tX/s640/Slide7.JPG" width="640" /></a></div>
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So what is a Tiger Mom?<br />
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Whether you call me a Tiger Mom, Mama Bear or something else, the definition on screen pretty much holds true. And of course this also applies to Dads, Nans, Grandads, and everyone else who cares deeply about someone with Down’s syndrome.<br />
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We are fiercely protective of our loved ones because they are all too often discounted by people who actually know nothing about them as individuals but base all their opinion on theory and their experience with other people who happen to have Down’s syndrome. We have been conditioned to life on the defensive because of our experience. Because of our love. Our trust is thin and closely guarded and we have quite probably been burned before.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6WcqfGXzFrkh5BraCHncSJmb-6xanj5xn7JzU_QXoVF36n57AGaK0VMmgvEDxT4Y2yJMo3euTyhA38iLIZ_hmA2VT8BGlviBtqdOGGzn5KiPeT4vRmzvtaNxCsa4L52tTdA3nsspo-ioB/s1600/Slide8.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6WcqfGXzFrkh5BraCHncSJmb-6xanj5xn7JzU_QXoVF36n57AGaK0VMmgvEDxT4Y2yJMo3euTyhA38iLIZ_hmA2VT8BGlviBtqdOGGzn5KiPeT4vRmzvtaNxCsa4L52tTdA3nsspo-ioB/s640/Slide8.JPG" width="640" /></a></div>
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Those of us who whose knowledge of Down’s syndrome extends well beyond theory know how dangerous the stereotypes and knee-jerk comparisons can be. We also know that Down’s syndrome is not disaster, it is only difference.<br />
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But most importantly of all, we are driven by the belief that every human being is equal and makes a contribution to this world. Human beings must not be marginalised. We all bleed red.<br />
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Of course people with DS can have medical issues, and of course they will have difficulties, but hand on heart, who do you know with none of these issues? I’ll leave you to answer that one on your own.<br />
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I’ll also leave you to challenge that theory with a Tiger Mom at your peril!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNG34UW6Uo8zQCPIZOs2F5XKJSNNwZfxU7W7tDAQzsrcJtJwLOznCp-AuAT8RWPimmOzYFLmLD2E8opYCPP7LfD5WZ8bGXPjMDP6J-KsDsSFo3mZ7EWpA6-vOnbX5SD4LiXKQAneKvxplm/s1600/Slide9.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNG34UW6Uo8zQCPIZOs2F5XKJSNNwZfxU7W7tDAQzsrcJtJwLOznCp-AuAT8RWPimmOzYFLmLD2E8opYCPP7LfD5WZ8bGXPjMDP6J-KsDsSFo3mZ7EWpA6-vOnbX5SD4LiXKQAneKvxplm/s640/Slide9.JPG" width="640" /></a></div>
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Needless to say, being bombarded with negativity creates a mighty deep chasm between parents who are trying to welcome a new child to their family and the professionals whose job it is to “fix what’s broken”…<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPBFUfzb_TYFGE_viRqNm71nahr2vg-6zzPH8OeBacj9VCZEELIa79QiygWgzOWdfYYnoWf2Gs7fIgqcj00H9HxE9DDFTnKwYIksSKnRSy9BMkQMWLqxpHdPITiJmYbNtrjQQmVkeWv8yf/s1600/Slide10.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPBFUfzb_TYFGE_viRqNm71nahr2vg-6zzPH8OeBacj9VCZEELIa79QiygWgzOWdfYYnoWf2Gs7fIgqcj00H9HxE9DDFTnKwYIksSKnRSy9BMkQMWLqxpHdPITiJmYbNtrjQQmVkeWv8yf/s640/Slide10.JPG" width="640" /></a></div>
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Because what they all failed to realise is that despite a diagnosis, my son is not broken.<br />
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He is not a condition.<br />
He’s not a problem.<br />
He’s a boy.<br />
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And his name is not ‘Downs Syndrome Person’ or ‘They’.<br />
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His name is Rukai.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyXDFKpPO5CBklzlpltntePPuHUVRiTVr0bfbcREDjUW74bJcQN_U-5lWOuyRpJV3rRI7k8LKb3Kaj-RoouHe-tShyphenhyphenS6nQNPOv8Mj9tiD2auBMxBY0yOKmr7NRT-7FRvWKuyFlPvgPU1TB/s1600/Slide11.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyXDFKpPO5CBklzlpltntePPuHUVRiTVr0bfbcREDjUW74bJcQN_U-5lWOuyRpJV3rRI7k8LKb3Kaj-RoouHe-tShyphenhyphenS6nQNPOv8Mj9tiD2auBMxBY0yOKmr7NRT-7FRvWKuyFlPvgPU1TB/s640/Slide11.JPG" width="640" /></a></div>
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Right. So how DO you create a Tiger Mom?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi88q_oWBC03UaIIaA_GrgttsEF068YO35WuOO67c7Iydr9YsCOeIPTOVrvHxAH8TJu6zz2YgkHtBkKaB9vFU537MY_1gWdSLGCgvMQSFFFPtEwlb-k9UVkCxymukNkqLPlCn8zv0-sGcZw/s1600/Slide12.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi88q_oWBC03UaIIaA_GrgttsEF068YO35WuOO67c7Iydr9YsCOeIPTOVrvHxAH8TJu6zz2YgkHtBkKaB9vFU537MY_1gWdSLGCgvMQSFFFPtEwlb-k9UVkCxymukNkqLPlCn8zv0-sGcZw/s640/Slide12.JPG" width="640" /></a></div>
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The best way to create a Tiger Mom? Turn her from Mother into ‘Other’.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx7GgYjC72yFJAloylkU3UxgX6-ISyXWGXR_3CDQElMnFHGlUBXzeXgq3AXEgpfVmAMC_LsZR08Ifs3otcriwZmsr24e5LDnvy0sI-WYRN-ym692HIodkerhUTmfextiIMiXETJ7RnzHa5/s1600/Slide13.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx7GgYjC72yFJAloylkU3UxgX6-ISyXWGXR_3CDQElMnFHGlUBXzeXgq3AXEgpfVmAMC_LsZR08Ifs3otcriwZmsr24e5LDnvy0sI-WYRN-ym692HIodkerhUTmfextiIMiXETJ7RnzHa5/s640/Slide13.JPG" width="640" /></a></div>
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You’ve seen in the opening video how heavy it is to be bombarded with negative language. A typical mother-to-be is congratulated. She is smiled at, asked about planning, whether she’s selected a name, has she finished the nursery.<br />
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We had none of this. I was ‘othered’ from the start by my age and my medical history. It wasn’t a joyful journey. And when the first anomaly was detected, there was an immediate course correction amongst the medical team to identify and ‘fix the problem’. I was hastily turned away from the ‘ordinary pregnancy’ pathway and bundled through the door marked ‘Other’.<br />
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Of course any woman would appreciate the attention to the health of her unborn child, but the antenatal team mustn’t focus so heavily on the medical issues that they forget they are still dealing with the same woman who arrived to the appointment in total positivity. My unborn son was loved just as much AFTER the identification of an issue as he was loved before the identification of the issue; even more in fact, as I felt a far greater need to protect him from all the furrowed brows around us.<br />
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<b>I’d wager to say that when women are upset about a finding antenatally, it is from a point of love and a need to protect the unborn child. A mother’s reaction can only be turned to fear and horror with guidance and provocation. And those come from loaded language.</b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdZ4_h_IvArU8rwZljgFjzOErLjXJglNfub02J7n0jzQM5hbXxxUowSrMwYnYZz4xF82TWHgq3DrJcwx9ZOmlCuP5OIKiTniswF7Gx5BgLW8exNTL1cmh2Y1vM8Auwl8Emty0-0HhPmEMJ/s1600/Slide14.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdZ4_h_IvArU8rwZljgFjzOErLjXJglNfub02J7n0jzQM5hbXxxUowSrMwYnYZz4xF82TWHgq3DrJcwx9ZOmlCuP5OIKiTniswF7Gx5BgLW8exNTL1cmh2Y1vM8Auwl8Emty0-0HhPmEMJ/s640/Slide14.JPG" width="640" /></a></div>
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I’d ask all professionals to please be more careful to not pull the rug out from under that mom’s feet by ‘othering’ her, or the damage is already done and her trust will begin to decay.<br />
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It is also important to remember that the antenatal medical community basically ‘sets the standard’ for how everyone views and treats people with disabilities – medical practitioners are the first ones to identify the disabilities after all. So when language remains so negative from the offset, it helps to embed the ableist attitudes we see so prominently across all of society. The only way we can heal society and improve equality across the board is to change the way we speak about disability.<br />
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And I believe it all starts with antenatal medicine.<br />
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Every woman’s pregnancy is full of hope until someone takes it away. Don’t be that person. Find a better way to deliver a diagnosis without focusing so hard on the negatives.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiOhZKjzfmFItYB9mOTTELIMee2ZqdPVmlfBdpJNsajMG10PIaotQ4-LsZnvTamotRhHg9aQm_rHjJYgPyGqj3-ClJvhmo4YHBkpVnKTsFBC_iyWPJJeWsXowPSLWw_GhAmctw16SEmt4Z/s1600/Slide15.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiOhZKjzfmFItYB9mOTTELIMee2ZqdPVmlfBdpJNsajMG10PIaotQ4-LsZnvTamotRhHg9aQm_rHjJYgPyGqj3-ClJvhmo4YHBkpVnKTsFBC_iyWPJJeWsXowPSLWw_GhAmctw16SEmt4Z/s640/Slide15.JPG" width="640" /></a></div>
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The second way to create a Tiger Mom? Go well and truly over the top.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdVBZKKAPDV6YFAFCiXfL-kclQsLYQoe-Vw2EmeZyOt7AHhKBsGn37vi5j_gpR96WQybxbRSKXYGfELSb8qhUWdHBnUPMxV0epzLWUygjeWXKZ71e_PqdzRgYQ6o-epjw9FeP4YfoiSJNb/s1600/Slide16.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdVBZKKAPDV6YFAFCiXfL-kclQsLYQoe-Vw2EmeZyOt7AHhKBsGn37vi5j_gpR96WQybxbRSKXYGfELSb8qhUWdHBnUPMxV0epzLWUygjeWXKZ71e_PqdzRgYQ6o-epjw9FeP4YfoiSJNb/s640/Slide16.JPG" width="640" /></a></div>
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I have, on a few occasions over the past 6 years, asked medical professionals whether they’d be asking me a question / taking a specific approach, etc. if Rukai did not have Down’s syndrome. This is largely because much of what we’ve experienced often feels like overkill; like a complete box ticking exercise because he has Down’s syndrome, without paying more specific attention to Rukai as an individual.<br />
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But nothing has come close to our ‘diagnosis day’.<br />
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I’ll help you get a feel for it with a quick little quiz…<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-PvsTaBsd8jeWDe4too23sEedyOPauDW1IUpLjVX8DCkhKCqECtavPBd_JPtvtH6Jn-Ee0OaC66RmsYNEe2ZCgalNaV49mkivWlvXWiiNpRzjfM6Fowf1uLOMWP0I0s-wBdyqEx6trhJu/s1600/Slide17.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-PvsTaBsd8jeWDe4too23sEedyOPauDW1IUpLjVX8DCkhKCqECtavPBd_JPtvtH6Jn-Ee0OaC66RmsYNEe2ZCgalNaV49mkivWlvXWiiNpRzjfM6Fowf1uLOMWP0I0s-wBdyqEx6trhJu/s640/Slide17.JPG" width="640" /></a><br />
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My mother, husband and I were awaiting Rukai’s blood test results in the private room they put me in after his birth. Minutes after my husband stepped out of the room for a little air, a parade of five hospital staff, two whom I had never seen before, walked into the room, and lined the wall in front of my bed. Before I could do anything about it, the doctor started telling me and my mother that Rukai had Trisomy 21.<br />
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I pulled Rukai closer as the doctor began to speak and then told him to stop talking until my husband came back.<br />
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Not only did we not need the circus in front of us but for him to start speaking in the absence of my son’s father was more than I was prepared to take. I made them stand there and wait for him to come back, then after he’d taken a bit too long for my liking I asked my mother to go and find him. To this day I haven’t a clue who the other two people were as my notes don’t give any details.<br />
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Worse still, that diabetic midwife I’d seen week in and week out for so many months was in her clinic right down the hall. She could have come in, sat with me and given me the news.<br />
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Sending five strangers on parade to deliver such sensitive news was about as poor a judgement call as you can get. I am a huge supporter of the DSA’s ‘Tell it Right, Start it Right’ programme as a direct result of that gross insensitivity. That shouldn’t have happened to me and I certainly don’t want it to happen to anyone else.<br />
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You can also create a Tiger Mom by constantly offering her help instead of hope. Her child isn't broken and doesn't need 'fixing', he or she needs support to succeed in life.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZGOY9_MvNEGLXa8-34pIIRDJWx_k9Eaa9-nnBJQ8fGYB78XGRRELtLBsEb-RTmTu2Q9YDQFQB-BvHZ4MgRDpa0tLaJclEKdsfiTm8gvonINLzDrbZAfAbL__UQCIb7R-bYGISkA8IRC19/s1600/Slide19.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZGOY9_MvNEGLXa8-34pIIRDJWx_k9Eaa9-nnBJQ8fGYB78XGRRELtLBsEb-RTmTu2Q9YDQFQB-BvHZ4MgRDpa0tLaJclEKdsfiTm8gvonINLzDrbZAfAbL__UQCIb7R-bYGISkA8IRC19/s640/Slide19.JPG" width="640" /></a></div>
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It may look like semantics but it’s not. I appreciate the word ‘intervention‘ is medical, but when you are talking to new parents there are far gentler ways to frame the ways that their newborn child can be supported than to use a loaded word with such negative connotation.<br />
<br />
In our case, we didn’t pursue Makaton early on as it was being forced upon us as a ‘need’ because our son was perpetually being defined as ‘less than’. Like the diagnosis, this too was handled terribly. The phrase ‘early intervention’ is still cringeworthy to us six years later. In EXACTLY the same way professionals don’t like to be told what parents have found out for themselves, parents don’t like to feel their hand is being forced by people who have known their child only for the span of a medical appointment. Take a step back. Calm down. Present information more sensitively and with empathy for how the parents may be feeling. More importantly remember that every child is an individual and your learned theory is less relevant than every individual child’s <b>actual life experience and history</b>.<br />
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In the case of Makaton, my son would have progressed better and sooner had we not been pushed away from it by overbearing and insensitive professionals. We are catching up now but it feels like a huge missed opportunity which could have easily been prevented.<br />
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This is from a blog I wrote when Rukai was only two months old. Two very negative concepts were already embedded in my thoughts: that of ‘othering’ and an introduction to how much professional input would go on to feel like little more than a ‘box ticking’ exercise. With every medical appointment these feelings grew stronger.<br />
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These people were asking us to respond to our son in a certain way but their actions were actually making this entirely impossible. It was infuriating and maddening all at once and I began to suffer from anxiety as a result, questioning whether I was doing a good enough job as a mother.<br />
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In retrospect, the latter is perhaps the clearest evidence of the damage caused by all that negativity. It’d been drilled into my head that I’d do something to cause harm to my son so naturally I thought nothing I did was good enough. I know now that this is not true, but it’s been a long road to get here. Again, totally avoidable.<br />
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The next way you can easily create a Tiger Mom is to offer her leaflets instead of <b>lifelines.</b><br />
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Leaflets certainly have their benefits, but put plainly, you can’t ask a leaflet questions. It’s important to not rely on providing information to new parents from leaflets alone. Learn what social interaction and real life information you can pass on to new parents and parents-to-be and point them towards it.<br />
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The beauty of online communities is the ability to dip in and out of them with as much anonymity and lack of commitment as you like. They are informal and as ‘safe’ as we need them to be. New parents who are being told their child is going to be different have a huge emotional adjustment to make. They will most likely feel put off by a leaflet that says in effect to ‘read this because you are now one of these’. They will probably not want to ask a charity for information, nor to join a ‘support group’ because both further the ‘othering’.<br />
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Remember that there is safety and comfort in that ‘arms length’ interaction in the early days. <b>Offer everything and let the parents choose which provides what they need, rather than only giving them what you think they need</b>.<br />
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If you really want to create a Tiger Mom, take what isn't yours.<br />
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When Rukai was born, the hospital took our personally identifiable data, including our hospital numbers, and passed them on to a Down’s syndrome registration database without my knowledge or authorisation. I only learned about this because the Down’s Syndrome Association leaflet pack included details of the database and who to contact to opt out. I was livid. If there is anything that reinforced my anger, it was this.<br />
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We opted out. I questioned at the time what the purpose of keeping the data would be, and am actually more concerned now in light of NIPT rollout. I would certainly hope that my son’s data wasn’t being used to support efforts to prevent people like him from existing.<br />
<br />
___<br />
<br />
From the minute I was diagnosed gestational diabetic I felt as if medical professionals were trying to take ownership of my son and do things ‘to us’ instead of ‘for / with us’. Taking and passing on our data was merely the icing on the cake.<br />
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If there is a valid need to collect and share someone’s data you should ask for it. Thankfully the European GDPR will eliminate any loophole legality of this process in the UK. And if you wouldn’t be taking certain data from a ‘typical’ child, you shouldn’t be taking it from a child with Down’s syndrome. Especially without asking for it.<br />
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And you will certainly create a Tiger Mom by throwing her only child into a proverbial box.<br />
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<br />
I cannot keep count of how many people have referred to my son as ‘They’.<br />
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There is a belief by many doctors that he must certainly be in a special school. ‘Othered’ without knowing anything about his personal abilities. When he fell ill last winter, we took him to A&E where the doctor said ‘he goes to special school?’ She was absolutely shocked to learn that he attends mainstream.<br />
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There is also a prevailing belief that Rukai has numerous medical problems when he hasn’t. I appreciate that many people with Ds have medical issues. But many do not, and that is all too often forgotten. Do not remove people’s individuality by assuming that everyone has the same issues just because they have the same genetic condition. They don’t.<br />
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One audiology appointment was led with ‘has he had any surgeries lately?’ The appropriate question would have been something like ‘how has his hearing been lately? Any changes?’ Again, it’s not semantics. Please, see this. Try to feel this. Learn this. It’s so damaging.<br />
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During a recent surgery follow up (surgery that had zero to do with Down’s syndrome) the doctor said ‘well the good news is that he doesn’t need any further surgeries…<b>with all the other problems he has</b>’. I beg your pardon?!<br />
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He doesn’t have any ‘problems’. The reason his development delay poses any issue at all is because of outside input. Rukai is absolutely fine with his development and his abilities and we are happy to move at his pace. What is the hurry after all? It’s his life, not ours.<br />
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We even had one professional write what you see on the screen in a report.<br />
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‘You explained that you and your husband are very happy to get to know your son as an individual’.<br />
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What a ridiculous thing to say. The only reason I can think of whereby someone would question whether we were viewing our own son as an individual, is because that person’s <i>own</i> base belief is that he is not. Projection of a personal belief that Rukai is 'one of many'. ‘They’. ‘Other’.<br />
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Another stack of kindling on the fire. The Tiger Mom grew claws.<br />
<br />
___<br />
<br />
And all these statements and false beliefs and stereotypes come in and out of our lives, when all the while our day to day is looking something a little more like this…<br />
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<i>(Here I inserted a video of Rukai’s preschool development, during which he is climbing, eating food with a spoon, bouncing, learning to walk, dancing, basically doing everything a ‘typical’ child would do, just a little bit later, and in his own unique way.)</i><br />
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And that’s what it’s all about.<br />
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Not disaster. Just difference.<br />
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Rukai is six now. He is sharp as a tack, he is determined to a fault, he has the true steel grit of a true warrior. He is my son after all!!<br />
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He’s just finished year 1 in mainstream school, is working on signing and basic phonics. He still has difficulty with mobility but he’s getting stronger every day. I’ve only just heard him say ‘MaMa!’ with true purpose but he sure got there in his own time. He said it.<br />
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He’s not yet toilet trained but he’s on his way. He is behind developmentally to his age peers but he has plenty of friends amongst them. He is very popular at school and lights up every room he enters. He has an emotional intelligence others can only dream of, in particular the owners of all those negative voices from the past. Those voices which will remain firmly in the past, unless they are brought into today, solely to educate others.<br />
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I will remind all those people that my son is not a condition. He is not a problem. He is not a ‘risk’. He is not ‘They’.<br />
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He is a boy. He is Rukai. He is amazing.<br />
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And we are still not sorry.<br />
<br />Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com4tag:blogger.com,1999:blog-195981949747094692.post-79098153280920553742018-05-26T12:37:00.000+01:002018-05-26T20:52:02.146+01:00Pilgrimage.Seven hours in the car, alone, uninterrupted, gives a girl plenty of time to think.<br />
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It's only the second time I've left Rukai for a few days to do 'something important'. The last was a flight overseas to that epic march in Washington, but this one was much closer to home and has made me far more introspective. Why on earth is it so pressing for me to get back to the Lake District, to summit a mountain which in the view of many isn't much of a mountain at all? Yet Scafell Pike is the highest peak in England, one of three compressed into <a href="http://downinfrontplease.blogspot.co.uk/2017/09/the-consequence-of-fear.html" target="_blank">an event I left incomplete just about nine months ago</a>; to the day as I write, in fact.<br />
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I drove through torrential rain, trying to see through the water spitting up off the back of the lorries, trying to see through my heart and its reason for taking this pilgrimage up north. Alone. I was singing along to Led Zeppelin's 'The Battle of Evermore':<br />
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<i>I hear the horses thunder, down in the valley below. </i><br />
<i>I'm waiting for the angels of Avalon, waiting for the eastern glow...</i><br />
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You bet I'm waiting. Coincidentally, I've waited the same number of months as it takes to bring a new life into the world, desperately needing that sunrise and summit to deliver new life from me. To put this down. To close the book on another set of bullies. Because in retrospect, that's exactly what they were.<br />
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I've done this sort of thing so many times before, and my husband just nods and supports what I need to get done. 17 years together and he's become pretty aware of the fact that I am comprised of 60% water and 40% 'need for closure'.<br />
<br />
As I'd been looking at routes up the mountain I bounced the idea off him that maybe I'd take the longer more scenic route to the top. He just looked at me, waiting for me to answer my own question, which I did: 'no, if I don't go exactly the same way up, it won't feel finished.' So tomorrow will steer me to that same parking lot. The one I'd last seen with eyes red from tears of angst and anguish and anger so deep it boiled my bile. Those fetid strangers telling me I couldn't. You cannot because we think you aren't able. Now please be quiet so our van drivers can get some sleep (on top of my kit bag as it happens)...<br />
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I know exactly what I'm capable of. So why on earth do those words and those actions light me up just remembering them? Why can I not rest until I finish this thing?<br />
<br />
_____<br />
<br />
<br />
Rukai finally learned to jump while we were at a theme park a couple of weeks ago. He's six years and three months old and he's finally learned to jump. The first attempt so self-led, so out of the clear blue, it gives me that sly 'I-told-you-so' smile every time I recall it. Climbing off a rollercoaster, he took my hands, bent both knees and launched himself onto the floor, very nearly effortlessly.<br />
<br />
"Well done, buddy!" said I, beaming. Another milestone. They all come late but still they come. I remember hearing how he wouldn't be able to do ABC without this-or-that-therapist and there he does. With love. Only love.<br />
<br />
Life is learning. Love is therapy. Rukai is not a medical problem, he is a boy learning how to do things. In time, in time.<br />
<br />
As we reached the exit steps, he decided to jump down them all. My cheeks were about to burst from the joy streaming across my face. I told the ride operator he'd never done this before, still her lack of interest was palpable. Every day we are out there clocking milestones and winning battles while she lives inside her ordinary, wearing it like a cloak.<br />
<br />
And there we took our joy out into the sun.<br />
<br />
As do all new-things-that-kids-figure-out, the cycle continued for the better part of an hour. Off this ledge, off that ride, off another wall, he took my hands and jumped. And then there was a ramp. I was stood behind him, still holding his hands, so I could not see a furrowed brow thick with concentration, I could not see an epic grin of achievement, I could only see knees bend followed by the distinct sound of two feet slapping the floor in unison. And again. And again. And I cried out "Rukai! Have you just jumped all by yourself?!"<br />
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It was a question, yet I already knew the answer. He has. He can. He will.<br />
<br />
_____<br />
<br />
<br />
Yesterday's seven road hours, in all their rainy darkness, took me back to the shine of that magical day of jumping. To the first moment of standing. To the day he figured out where his feet are. To the first grin, the first laugh, the first babble. Words are out there. Words will come too. Patience is a virtue. Patience is everything in this life.<br />
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It's ok to go slow, as long as you go.<br />
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At the beginning of life with Rukai, we started logging milestones in one of those baby books before we realised that it would be too painful to watch the dates go by without a milestone tagging along. And then one magical day we realised the milestone books are a total nonsense, and they only allow medical professionals who really know so little about what Rukai can and cannot do to gain information and pretend they know so much. Medicine is meant to work along with us, not pat us on the head and say 'shhh, let the experts handle this.'<br />
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I've said it before but I'll say it again because it's important: the expert on Rukai is Rukai. I am just the tour guide.<br />
<br />
Yet there are so many people back through those 6 point three years who would deny all of it and imagine there is no hope for a journey, there is no success to be seen in the invisible crystal ball he has been shackled with round the ankle. He can still jump with that shackle on so they'd best think through those theories once again. We'll wait.<br />
<br />
Because patience is everything in this life.<br />
<br />
Like our progress, those memories are relentless. And they always yank my chain. Because I feel as if I could have defended him better. I feel as if there is a magic switch to throw which will open their eyes and take away the misinformation. I cannot go back and fix everything I didn't do well enough so now what? Perhaps that's the theme for the journey home on Monday.<br />
<br />
Still those seven road hours were a serum, a balm. They provided the missing puzzle pieces. And somewhere in the midst of a jaunty, drizzly loop around a silent lake, while breathing in country odors and bleating sheep song, I figured out exactly why I am up here again. Why I have to finish this challenge, even when it's no longer the same challenge. Why I have to prove to people who couldn't care less - just like that ride operator - whether I've done it or not.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCRqbQJyFhffNLJO2Elq-KpRiRVUn0H16c4CqivaBNODCPPDkTeAujmelnp5-chS5i2gyaEYXdRvavXgNmRirN53b4wIgNT8HF8zHmpGqn3qE1wnON1Mo1AJhCEV3-3ASrUsN1K85wG3Ty/s1600/07.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Lake Buttermere" border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCRqbQJyFhffNLJO2Elq-KpRiRVUn0H16c4CqivaBNODCPPDkTeAujmelnp5-chS5i2gyaEYXdRvavXgNmRirN53b4wIgNT8HF8zHmpGqn3qE1wnON1Mo1AJhCEV3-3ASrUsN1K85wG3Ty/s640/07.jpg" title="Lake Buttermere" width="640" /></a></div>
<br />
I love to run. I love to do athletic challenges which may look on paper like they are far beyond my reach. But as long as you keep moving, nothing is beyond your reach. That is what goals are for. Aim high. Draw the bow. Fire the arrows. Learn when you miss. Draw the bow again. (<i>"Sing as you raise your bow, shoot straighter than before."</i>)<br />
<br />
I fight so hard for people to stop marginalizing my own ability because every.single.day. I see how many people marginalize Rukai's ability. I get it. I know what that looks like. I know all too well how it feels to be on the receiving end of pity and low expectations. People who don't know either of us from a bar of soap take one look, whether on paper or in person, and make every last assumption about capability and drive and determination. But what they fail to realise is that having the ability to endure such staggeringly low expectations makes the pair of us stronger than they ever will be. Those who endure, and survive, and continue after they fail, and eventually succeed, are going to change the world.<br />
<br />
Don't throw baby in a corner. Don't throw mama off a mountain.<br />
<br />
You just try.Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-49505914025757105692018-03-21T13:41:00.001+00:002018-03-21T16:33:20.192+00:00Of Gratitude and Pity. | World Down Syndrome Day 2018As we find ourselves here at the end of the most recent trip around the sun, on that special journey that runs from March 21st to March 21st, I am feeling every one of the emotions all at once. 'Having all the feels' as it's said. So much has happened between the last time I wrote about this day and this time I'm writing about this day and I'm finding myself at a loss for words. Which really is saying something, particularly if you ask my husband because he'll tell you that I've never shut up. So imagine what it takes...<br />
<br />
Anyway in this kind of situation, I suspect it is exceptionally positive that I am still talking. Because this is important. Not just to me, but to you. More than you realize.<br />
<br />
So where are we now? Do we know what Down Syndrome is? Yep. Check. Six years of it, and still the same third copy of the 21st chromosome.<br />
<br />
Next, still loving our son so much it hurts?<br />
Yep. Today a bit more than the last, for the new tattoo decorating my arm, incorporating my life motto and that magical 'lucky few' set of arrows. Draw the bow and let loose (the dogs of war). Over and over and over. That pain worth it for all the other pain having now dissipated. Those early days of sadness and feelings of loss, those feelings implanted by a medical community who would find it simpler to read lists and tick boxes and study thin surveys and recall days of old where people were not people but locked away simply because other people didn't choose to understand them. They are learning, and my job now is to help teach them. Aside from ensuring Rukai has a beautiful and successful life, nothing matters more.<br />
<br />
Which brings me to the first part of this round the sun journey. We will start with the less desirable, the less positive, the less joyful, to get it out of the way. We can't ignore it because ignoring things like this is what has got society into this ableist mess in the first place. But we will look it square in the eye, grab it by the shoulders, shake our head and say 'no, not today, no. You're not coming in today. Nor tomorrow. And we will make you go.'<br />
<br />
These are the trolls. The haters. The people who mock our loved ones. Those who make people with Down Syndrome and other disabilities the butt of a joke and they hold their bellies with laughter and covet those others who join in like sheep. These people will laugh until the end of time, because these people will never get it. These people will never come round. These people will never be part of my life, and my world, and accept my son as a person who has a contribution to make to society. And you know what? I no longer care. For them I feel nothing but pity, and, if I'm being honest, slight embarrassment for their total disregard for what makes humankind amazing, and that is that we celebrate our differences, and we welcome everyone to the same grand table called Life. If you want to rock up outside and hang out in the mud with the pigs and throw slop at us, we will slam the door in your face and turn back to our joy.<br />
<br />
And there is where I find the Gratitude.<br />
<br />
Despite what I was led to expect when our son was born, our world did not come crumbling in on us. In fact, it got bigger. The mist lifted, the sun shone, every other positive analogy for what makes a life better, well...it happened. Every bit of it. We inherited an entire new family that splinters off into a billion different directions. Because it's not just a Down Syndrome family we joined, we became part of the global disability community and THAT, my friends has prised open my eyes and lifted up that huge part of my brain that wasn't doing any work before. Now I'm starting to understand what every marginalized community of people in all our history has experienced. I no longer see people with disabilities and think 'I wonder what's wrong with them?' Because there IS nothing wrong. There is only difference. There are medical complications and things that take health and many that take life, but it is only difference. We all bleed red.<br />
<br />
Over this past year I have considered the striking similarity of Rukai's developmental delay to my very slow running pace, how easily I injure, how hard I have to work to improve my running ability. We do not all learn to do things quickly. We are not all good at everything. Equal.<br />
<br />
I have considered the disability endured by my aging and ill father that ended in his death five years ago. If we live long enough we will all become disabled in one way or another. Those trolls who mock disabled people will most likely meet Karma one day and she will bite. Such a shame it will be too late to undo all the harm they've caused people in the interim.<br />
<br />
I have reflected on something I read recently which took the wind out of me and to paraphrase: if 94% of people who know their child will have Down Syndrome will terminate the pregnancy because they are fearful about what kind of life their child would have, what would the societal 'normal' look like if all those people were allowed to exist? Rukai wouldn't be the only child in his school with DS because there'd be dozens of others like him. I don't know, call me kooky but I'd take a few more, would I be so lucky. I know no one else who lifts everyone he encounters like he does.<br />
<br />
If we fear that which we do not understand, how much less afraid would we be if only we were allowed to experience these human differences at greater scale? What if we could learn so much earlier that disabled human beings are not to be feared? Why are we so afraid? And why do we let ourselves live our lives in such a negative place?<br />
<br />
No fear. Not here. But I had to have Rukai to know this. I go on and on about it because I want to save anyone who still may need convincing from further years of not knowing how wrong it is to constantly 'other' people with disabilities. It infuriates me because it's just so flat out foolish.<br />
<br />
We. All. Bleed. Red.<br />
<br />
Back to Gratitude.<br />
<br />
I am grateful for the gift of my son.<br />
<br />
I am grateful for what is good about him: his humor, his never ending empathy, that his permanent set-point is love, that he gives a wicked cuddle and has an equally wicked laugh.<br />
<br />
I am grateful for all of you who have read this far, who care about this. Who love him, and listen to me. I love you all, more than you can possibly begin to understand.<br />
<br />
I am grateful for the very inclusive place we are living, the beautiful school who celebrated every minute of this very special day with us this year. To have taught the children the Makaton and lyrics to the '50 mums' video and live streamed the performance on the school Facebook group today, there are no words to say what that meant to this tired old mum.<br />
<br />
But I am most grateful for the foundation builders.<br />
<br />
To all the mums, and dads, and brothers and sisters, and children who are now adults, or those who were sadly lost long ago. To all the activists and advocates, the charities and fundraisers and awareness bringers. To all the medical professionals who <i>do</i> get it, and who are working so hard to educate their colleagues. To all the celebrities who are using their fame and status as a force to bring forth a positive change in this life by calling attention to inequality everywhere. For all your years of tireless advocacy that has got us to this place called Today. For those setting down everything else in their lives to keep the conversation going, to 'lean into the discomfort' as I read once and it has stuck with me ever since. I lean with you. I lean hard. The road is long but you have lain it and we are run / walking that road. Until we collapse and have nothing left to give but our last dying breath.<br />
<br />
Relentless. Forward. Progress.<br />
<br />
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Thank you.<br />
<br />
It is YOU who I think of when I am wiping back happy tears (again) because of something wonderfully inclusive that's happened in our lives.<br />
<br />
It is YOU who I think of when I notice language changing from 'risk' to 'chance', when I see so much less dispersion of the repugnant 'R word' and I know there have been millions of people who've watched a YouTube video and wept and clicked on thumbs up and commented about how much it moved them.<br />
<br />
It is YOU who I think of when I reflect on how easily we can mix in our community. Because without all you've done, society would not have come this far.<br />
<br />
But still so far to go. Shoulders back. Take a breath. Take my hand. Let's fire that arrow once more and fly.<br />
<br />
#theluckyfew<br />
#wouldntchangeathing<br />
#wdsd18Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com6tag:blogger.com,1999:blog-195981949747094692.post-77115140479300138232017-12-16T23:31:00.001+00:002017-12-17T07:32:45.844+00:00The one where all the dreams happen.<div class="MsoNormal">
It took me twenty minutes to stop crying.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Twenty minutes! That's a high school lunch break. That's a
'between meetings comfort and email break'. A drive to the forest. That's how long it
takes to finally fall asleep after a day so hard the only way you find
dreamland is to think of 'white, empty space' and hope for the best.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Twenty minutes. But it's little wonder it didn't last
longer, because this was a moment I'd waited to see for the entirety of my
life.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One stage.<o:p></o:p></div>
<div class="MsoNormal">
One dance performance.<o:p></o:p></div>
<div class="MsoNormal">
One son.<o:p></o:p></div>
<div class="MsoNormal">
One lifetime of hoping I'd live this moment.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We have been so blessed to have found the place we live in
now, and oh how we found it! Nearly pushed away by a real estate deal gone
sour, we somehow stumbled upon our current home 3-1/2 years ago, only five
houses east of that lost property. This house has brought us to and kept us in
this place, amongst these people, with this dance school, with that amazing
human being who has been so welcoming and wonderful to our beautiful boy who
wants little more than to share the joy that radiates from within him with
everyone in reach. Shaking bum. Grooving to his own beat. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My son. On a stage. Dancing.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="http://downinfrontplease.blogspot.co.uk/2015/01/i-hope-you-dance.html" target="_blank">Years ago I prayed that he would dance</a>. They had me so
worried he'd even walk. His walking still stilted with poor balance but today the angel that's going to change all that. Because...well, I'm crying again as I write this.
Because those deep fears remain ghosts. Those worries, vapor. That was my son up
there. MY son. On a stage.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dancing.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yes, I later had to carry him to the car he was so knackered, but STILL...</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Those who have known me for decades will be reading this
with an altogether different totality of heart and may quite likely be stood up
and cheering. My life was dance. My only motivator was dance. My soul...for
dance. I wish you were <b>all</b> there. I wish you could have seen that live. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My God.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It all feels too hard to explain, too vast to bundle up into
type on a screen. But if you know me you know I was incinerated this afternoon.
I stopped filming and fled to the lobby. Absolutely unable to stop the floods
of tears. I saw a man standing there and tried to explain what I was feeling,
how grateful I was. He happened to be the father of Rukai's dance teacher. It
was as beautiful a finish to that beautiful moment as I could have imagined. I
thanked him for creating her. And I meant it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I'd started filming the stage some 60 seconds before Rukai
was due on it. I didn't want to miss the curtain stroking past that beautiful
face. Not a second to be lost. Not for this. No way.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I said to the air 'come on dude, you can do it'. Not because
I didn't think he could, but because I could not believe this moment had
finally come. That I was about to see this. And the curtain pulled back and
there was my son. On that stage. And it was all I could do to hold the camera
still. And exactly as I did the day before while watching him perform in the school nativity, I
wept silently, while an epic grin reached the lobes of my ears and quite
probably pierced them with joy. A joy that wrapped around my very soul and
lifted me straight to heaven to high five the lost family. Those who were
seated right beside me while that camera captured it all. They clapped and
whistled for all they were worth. We celebrated that magnificent performance.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The one we were threatened with never being able to see,
those many years ago.<o:p></o:p></div>
<div class="MsoNormal">
Oh, we <i>saw</i> it, mate.<o:p></o:p></div>
<div class="MsoNormal">
We saw it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And that pride of my pride knows my pride because I told him
all about it. After he saw me grinning and waving at him in the finale. And he
waved back. And in that room full of our new 'dance family', there was, for
that moment, no one but us. Me on the floor filming, him on the stage
waving. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Oh this moment!! How it shines!!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhStcRlepIZuO0SMRP_J36B1uirt7MtJpjaurm7Sl1JZ_qA52RyNU07XOzGkre8d-20Ax_1hyphenhyphenm8WPJTvdMfD_ajNidAt4hWcguVh4PRckz2OCxqjOscNUh5W6TydWQOGC-PJT7HJoY9gV8m/s1600/stage+%25282%2529.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="431" data-original-width="285" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhStcRlepIZuO0SMRP_J36B1uirt7MtJpjaurm7Sl1JZ_qA52RyNU07XOzGkre8d-20Ax_1hyphenhyphenm8WPJTvdMfD_ajNidAt4hWcguVh4PRckz2OCxqjOscNUh5W6TydWQOGC-PJT7HJoY9gV8m/s400/stage+%25282%2529.JPG" width="263" /></a></div>
<div class="MsoNormal">
I'd no doubt he'd blow me away this afternoon but I am still
entirely in shreds. <a href="http://downinfrontplease.blogspot.co.uk/2013/09/rebuilding-cheese.html" target="_blank">And just like I'd rebuilt the cheese all those years ago</a>, I
have glued the heart back together again. My pride---</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
God, there are no WORDS for it!!!!! I have lost all
eloquence, the prose gone to gurning. I am equally full of and empty of
emotion. Never been so spent in all my days.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This has been a glorious year of personal disaster and equal
personal triumph. My plans for the next are larger than anything I've ever
pursued, mostly because I need those challenges to build myself into a better
me. I am nothing to Rukai unless I am the best me going. He deserves nothing
less.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But man alive, that boy--my boy--<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Well, if he is supposed to be suffering...<o:p></o:p></div>
<div class="MsoNormal">
If we are supposed to be 'barely coping'...<o:p></o:p></div>
<div class="MsoNormal">
If our life is meant to be difficult, and challenging and
painful...<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Burn the dictionaries.<o:p></o:p></div>
<div class="MsoNormal">
Go back to preschool.<o:p></o:p></div>
<div class="MsoNormal">
Teach me all of existence once again.<o:p></o:p></div>
<div class="MsoNormal">
You are wrong.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My words are the very best I've got to offer, and today
these words are clumsy. Disjointed. My mind is in a whirlwind. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Today, my son was dancing on a stage.</b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If I should die tomorrow, that alone has made this a life worth living.</div>
Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com2tag:blogger.com,1999:blog-195981949747094692.post-58017597143518507162017-11-20T13:14:00.001+00:002017-11-20T17:51:43.816+00:00Goddamn you, he's a PERSON.It happened to my Dad once.<br />
<br />
As he was dying, it happened to him. His body was riddled with the cancer that would eventually kill him, and he was in so much pain he could no longer walk. Disabled too by time, something which we will all face if we live long enough. That very reason society shits on the elderly. No one has the patience to 'deal with' them, the slowed pace, the grumpiness about physical deterioration going hand in hand with awareness of their own mortality. These all hard won along with the wisdom of the years should earn them respect. But so rarely it does.<br />
<br />
Those years forgotten. Achievements forgotten. To an ableist stranger, if you display disability, you are nothing.<br />
<br />
We had all gone over for a visit, that last Thanksgiving together, the most melancholy I'd ever known. No joy, no thanks, just fear of what was coming. And the pain was fully in charge of the visit, forcing Dad's pride into his pocket and his body into a wheelchair. On that same trip we'd taken him out for dinner, one of the last we'd ever have with him. As I got Rukai and myself into the car, T started to wheel Pop from our table to the door of the restaurant. But he couldn't get there.<br />
<br />
He couldn't get there because some impatient, selfish, ableist fool stood firmly in their way, looked directly in their eyes and wordlessly challenged them to just <b>try </b>to get past him. Oblivious to the scene from my vantage point in the car parked out front, they finally managed to escape and Dad was apoplectic with rage. A record number of F bombs, even for him - and for someone so weakened by disease to be so strengthened by anger told me all I needed to know about the exchange. Funny thing, big emotion. He was like entropy contained by two armrests and four wheels. The message embalmed in all that fury: goddamn you, I'm a <b>person</b>! How dare you disrespect me, merely because I cannot walk! If I were a younger man, I'd...<br />
<br />
If.<br />
If.<br />
If.<br />
<br />
Five Thanksgivings later, here we are in this small town, on the other side of an ocean. Minus one Dad. Plus one inclusive mainstream school which has been amazing, as have all of its parents.<br />
<br />
Until today.<br />
<br />
Now, Rukai is not a steady walker. We know this so we are always aware of and courteous about space and the speed at which typical kids wish to plow across a playground. We try to keep to the side to keep things flowing. We go at our own pace. Admittedly, sometimes this pace is frustrating even for me, but it's Rukai's so it's ok. He's in charge of that show, I'm just the stage crew - opening and closing the curtains on each day, standing by in the green room making the tea.<br />
<br />
Today we crossed the road more slowly than usual, hoping 'that-woman-with-the-pushchair' would pass us by before we could position ourselves on the narrow path. My way of thinking has always been that if you want people to be tolerant and accepting of your needs, you have to work within their norms while maintaining and teaching them your own. It's a bit like going outside to smoke before it was mandated. Courtesy for other people. That flows in my veins, it always has.<br />
<br />
Clearly that doesn't work both ways.<br />
<br />
Throngs pouring through the school gates, rushing to and fro to avoid missing that 'AM' attendance tick and having to go explain lateness again, I could actually feel the frustration as we hit the bottleneck at the gate, followed by the subsequent draft as people raced past us. After we were nearly rammed by three of them, I considered moving us to the side.<br />
<br />
But why should we have to? If there's a roadblock while you're driving a car you don't expect it to move out of your way, do you? Slow the hell down or go around us. We have a right to be here too.<br />
<br />
Now approaching the labyrinth of picnic tables, two pushchairs are passing one another. One heading in, one heading out. 'Out' pauses to let the other one through, with a slight smile and nod for 'In' and barely a glance at us. As we begin to navigate the same route, she barges past.<br />
<br />
<i>No room for you. Too slow. Get out of our way.</i><br />
<br />
This did <b>not </b>just happen here. Not here.<br />
<br />
No mate, you get out of <b>our </b>bloody way.<br />
Goddamn you he's a <b>person</b>. You get out of <b>our </b>way.<br />
<br />
I am on fire.<br />
I bring Rukai up the ramp and our amazing TA is there, seeing it all on my face.<br />
'Are you ok?'<br />
No.<br />
No I'm not ok.<br />
This is not ok.<br />
Society is not ok.<br />
<br />
I am broken. I am in shreds the past couple weeks and those shreds were just tossed on the fire and set alight. The black dog, the black death, whatever it's called it's got me in a choke hold right now. I completely lost my shit in the car on the way home and screamed it out. It made me feel better. Just. Meanwhile the wheel called 'things-which-are-so-bloody-hard-to-change' is rolling me into the mud again. Oh to break the wheel like that fictional Khaleesi.<br />
<br />
It occurs to me that a talk I gave earlier in the year at work which required a bit of research into how society views Down's syndrome has really shaken me to the core. I cannot un-see or un-hear some of the horrible attitudes out there, I cannot take away the misinformation other than to write about it, to rail about it. And again - still, always - it's the external forces and attitudes in our world which cause us distress. Down's syndrome in and of itself does not.<br />
<br />
And it never truly has.<br />
<br />
We are the lady in the magician's box. Empty box, full of nothing but us, bright and beautiful and shining and full of promise. And then the lid is closed and in comes a blade.<br />
<br />
Misinformation.<br />
And another: Fear.<br />
And another: Prejudice.<br />
And another: Discomfort with difference.<br />
<br />
And that magic man completes the illusion by pulling all the pieces apart and showing you that <i>wot hey!</i> The puzzle no longer fits, it is not linear. It is the outside forces which challenge the wholeness of the lady in the box. Leave the box alone and it's nothing more than 'move along, there's nothing to see here'.<br />
<br />
All these blades get jammed in, severing us, twisting us around, preventing us from just living in peace and then as quickly as it happens, out they come - away with the misinformation and fear and prejudice and discomfort. And the lady steps out with a grin and a curtsy, thanking the illusionist for cutting her to shreds. The unaffected watchers of it all sit and applaud, and sip their gin. Again.<br />
<br />
No thank you. I'm tired of <i>that </i>box too.<br />
<br />
Society is as broken as I am. It's like a never ending barrage of bad news and this next one takes the (urinal) biscuit...<br />
<br />
In the past week I've read a great deal about something called <a href="http://changingplaces.uktoiletmap.org/" target="_blank">Changing Places toilets</a>, following <a href="https://twitter.com/MumsMissions/status/928917044371869696" target="_blank">social media commentary</a> about the lack of them in John Lewis and other huge department stores. These toilets are designed to enable people who cannot weight bear to use a toilet or for their carers to change their incontinence products on an adult sized bed, through use of a hoist. These facilities prevent having to lay someone down on a filthy toilet floor to change them. Now, I have seen people recoil in horror when they watch someone enter the toilet on an airplane wearing only socks instead of shoes. Imagine having to lay your loved one on a toilet floor <b>every single time you go out</b>?<br />
<br />
Because there are only 1044 Changing Places toilets in all of the UK. 1044.<br />
<br />
I have two toilets in my house.<br />
There's two or three sets of them across the road at the doctors.<br />
More at Tesco.<br />
The library and all the cafés down the road in town.<br />
At the park, the firehouse, the church...<br />
<br />
I can use any of those. Others cannot. And even though our immediate family doesn't personally require a Changing Places toilet, the fact that others do and they are essentially prisoners to 1044 points on the map is a <b>massive, massive </b>problem to me.<br />
<br />
Following this outcry over the lack of facilities for human beings trying to just <i>live their lives</i>, people have still had the rocks to moan about campaigners 'expecting too much' and other such ilk like 'you can't cater for all disabilities'.<br />
<br />
Is that right? Ok, imagine waking up one morning and not being able to leave your house unless you mapped out a route via that magic 1044 places in the country where you could use a toilet, or change your child. Imagine that when you have spent ten years asking for a simple solution in more places, a solution which takes up about as much room as a parking space, that a retailer who will freely spend £7 million on a single advertisement will tell you that a) they cost too much and b) there's no room in their stores.<br />
<br />
Ikea found room. Try again.<br />
<br />
Ten years asking and it's not yet standard for new builds. The law has standardized how high bloody plug sockets have to be from the floor, and there are requirements about how many toilets must be in a bulding to align with number of occupants and even how wide the door to a disabled toilet must be. But a Changing Places toilet is not a disabled toilet. So to hell with you if you need more than standard help - stay in your house or seek out that 1 in 1044. Thank you for calling! Have a nice day!<br />
<br />
It's little wonder I threw a wobbly in my car. I am flabbergasted by all this. Every day it's another inequality somewhere. The rich get richer, the poor get poorer and 'the disabled' get shit on. Repeat, repeat, repeat. That wheel is kicking my ass.<br />
<br />
To all those big box retailers making excuses - shame on you. To all those with the attitude of 'get over it'. No. Never. Until society changes we will keep working tirelessly to change it. Because this is not good enough. I salute heartily all the campaigners - disabled people and able bodied parents / carers alike - who are out there fighting day in and day out for their right or their children's right to dignity. They are fighting for their right to <i>exist</i>, when society would find it simpler to lock them away, to prevent them from participating in life.<br />
<br />
And that is wrong on every level. Should a human being actually have to prove they have the right to exist? Check your troubles at the door and take that one on, friends. This is Rukai's long term challenge, not bloody Down's syndrome. Down's syndrome is society's excuse to treat my son like a piece of purposeless garbage.<br />
<br />
Not on my watch, mate. I know better and you will learn, you best believe it.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZpjArvpPIr_j75sWF67bQTJxWRilcl5XEUFdsUOUUzW6dNG4zfxNNWQiQuPJ0fr7iiyk4mw8KV4ULs7vsFtJZt_QXIvEJAoSlnI9Kft-kowKjIoHa8eJeETWhrijakS-2-9F8AezOaunx/s1600/Rukai+landscape+500px.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="333" data-original-width="500" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZpjArvpPIr_j75sWF67bQTJxWRilcl5XEUFdsUOUUzW6dNG4zfxNNWQiQuPJ0fr7iiyk4mw8KV4ULs7vsFtJZt_QXIvEJAoSlnI9Kft-kowKjIoHa8eJeETWhrijakS-2-9F8AezOaunx/s320/Rukai+landscape+500px.jpg" width="320" /></a></div>
This broken society looks past my son and others who have Ds as if they were a problem who shouldn't even exist at worst, or a plaything who can only give hugs and high fives, and keep them smiling at best. He is a boy with a future who will not be mown down by people moving too quickly around him. He will not be a child for the rest of his life (despite what someone said to me when he was born, which five years later still irritates me). He will be a man and if I have anything to say about it the world will be a far better place by the time he has grown up. I eagerly await the days when he will advocate for himself. And I guarantee that I will be the proudest wing man of all time.<br />
<br />
Failing that, I will die trying. I would hope to die very old, disabled from time, still caring about all these things.<br />
<br />
And so should you.<br />
<br />
_____<br />
<br />
<br />
Twitter: <a href="https://twitter.com/downinfrontpls" target="_blank">@downinfrontpls</a><br />
Facebook: <a href="https://www.facebook.com/downinfrontplease/">https://www.facebook.com/downinfrontplease/</a><br />
<br />
<br />Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-63119923672124329972017-10-21T14:34:00.001+01:002017-10-21T14:34:39.505+01:00Age. Less.I'm sat here staring down the barrel of 46, vividly remembering the climb up this Hill of My Forties. What a slog. What trials and tribulations. What a climb. What a view. This is the top, over which I'm about to fall. Down towards those ages which start with five, only to rise again. Up and down and up and down we all go. Riding this seesaw they call life.<br />
<br />
How we live!<br />
<br />
Sometimes battered, sometimes shining.<br />
Bruised and beaten one day, then singing to the sky of our glory the next.<br />
How we live.<br />
THIS is how we live.<br />
<br />
Those well past 46 will say 'Pah! Child! Wait til you hear what I've lived!'<br />
And I'd answer 'Tell me. Tell me all of it. This life, these days, so few and so full. So wide with possibility and so delicate to balance. Pull up a chair and tell me how you've done yours. And aren't we all so ridiculously lucky to be here!'<br />
<br />
Most of the time I don't know what the hell I'm doing. And it all happens anyway. And I laugh my way through mistakes and triumphs, victories and defeats. The more I learn the less I need to know. The older I get, the more particular I become about who and what I let get in. Isn't it all magnificent?!<br />
<br />
The beginnings and endings of my own experiences, then insert one husband and one child to make one family and those extra responsibilities piled on and we live in the tornado as a unit. We screech and roar and tumble around these days, sometimes fizzling out over the water and other times picking up houses and hurling them into the next county, screaming 'AIEEEEEEE!!!' And having each other's backs. And hearts. Always that, even when it's sometimes difficult to find, worse - to feel.<br />
<br />
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To all the days before and to come, I love you.<br />
Even the hateful bits.<br />
Even the drama.<br />
Even the confusion and loss and unrealized expectations.<br />
Even the lost dreams, because out of every darkness there comes light.<br />
<br />
Brighter, always. But you do have to look for it.<br />
<br />
Hard work, that.<br />
<br />
Still, as I age, I only want to age <i>less</i>. I don't want any days to go having been unlived. Having been missed. We either succeed or we learn. The clock ticks through it all and we grab time in a bear hug and squeeze, eyes welling up sometimes as we watch it go.<br />
<br />
Here atop Mount Forties, the slope below looks a bit nerve wracking. To see time before you and know the pace at which you will step forward to greet it, well that is something else altogether. In retrospect, all those previous decades didn't really tell me much aside from all that I didn't know.<br />
<br />
One more week and my latest trip around the sun will end. It's been one hot ride.<br />
<br />
AIEEEEEEEEEEEEEEEEE!!Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com4tag:blogger.com,1999:blog-195981949747094692.post-55127698325646492612017-09-13T22:25:00.002+01:002017-11-11T23:48:53.184+00:00The Consequence of Fear.<div class="separator" style="clear: both; text-align: center;">
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Maybe it's the hair. Surely that's got to have something to do with it, the fire burning straight out the top of my skull, red filament catching the wind. I have probably burned forever. Like magma, I simmer and pop and simmer again.<br />
<br />
But something recently has burnt hotter. It's burnt me to the core and straight back out and luckily like that TV mother of dragons I can burn and live to tell about it. So here, I'll tell you about it.<br />
<br />
How would it change you if you knew that swathes of people living and breathing and moving around on this great planet believed - beyond the shadow of a doubt, that your only child would be better off dead? Without knowing him, or you, or anything about your lives, better <br />
off dead.<br />
<br />
Chew on that: Better. Off. Dead. Not laughing and dancing and making friends and going to school and cuddling and...well, you get it.<br />
<br />
Better.<br />
Off.<br />
Dead.<br />
<br />
The more of an activist I become, the more I discover what people really think of Down's syndrome, the less I want to absorb from those people, yet the more I seem to stumble upon them. A vicious catch 22 and it's been splintering my resolve. I stand, but only just. I have been entirely frozen and unable to write lately because I just cannot constantly think about this.<br />
<br />
But I have to. I haven't the luxury of a choice. Because it's out there, and there's so little I can do about any of it so I do only what I am able.<br />
<br />
When you hear in the news that an entire country (Iceland) prides itself on 'eliminating Down's syndrome' when all that they've done is to prevent anyone from being born with it via terminating pregnancies, well...that, folks, is kindling. (It is also Eugenics.) Light 'em up.<br />
<br />
My son. My beautiful Rukai, better off dead? Really?<br />
<br />
Better off dead because he does things more slowly than everyone else?<br />
<br />
Better off dead because he has a greater propensity for acquiring some health problems - most of which a whopping motherlode of other people will acquire anyway?<br />
<br />
Better off dead because he struggles to walk, to speak?<br />
<br />
Better off dead? No. No he's not.<br />
<br />
How would you feel? Would you burn? Would you blaze?<br />
<br />
I do.<br />
<br />
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Rukai takes a longer time than most people to do most things, but he can and will do them, in his own time. Yet people constantly throw him into a box labeled 'incapable', and 'lost cause' and worst of all, 'better off dead'. Three copies of a chromosome and shazam. Better off dead. Clearly I must be imagining all the joy and the progress, all the happiness and the possibility, all the success and the little triumphs. I must be imagining all of it.<br />
<br />
Oh you bet I burn.<br />
<br />
I burn with the memory of what we were told to fear and so what we believed, and how we were treated, and how every memory of my only son's birth always begins with a billion layers of sorrow cloaked over us by others. In the fog of that sorrow, I cannot go back and easily remember the delight in looking at our new family member, holding him close, enjoying our beginning. That beginning, our enthusiasm, all of it, was ripped away from us by people who didn't have the first clue what Rukai would be capable of. Many linger still. And they always will. There is no escape.<br />
<br />
My mind and heart are ablaze. I burn. I know this will not change.<br />
<br />
We awaken every day ready to go to battle for him. That, my friends, is what is difficult about having a child with a disability. That we have to fight so hard for the world to just let him in. I'm so bloody tired. I'm so bloody disenchanted.<br />
<br />
I'm so bloody.<br />
<br />
Because all those who would look at him 'on paper' and immediately think 'better off dead'? They know nothing. They were wrong. He will succeed, in his own time. Do not underestimate him.<br />
<br />
He is my son. Don't you dare.<br />
<br />
_____<br />
<br />
<br />
Fast forward to late August 2017. Our mini bus parked up at the foot of the mighty Ben Nevis, tallest mountain in the UK. Stacks of people, mostly strangers to each other, piled out, loaded up with gear. Last minute pitstops behind the bushes and off we went. I was about to undertake the National Three Peaks Challenge: climb the three highest peaks in England, Scotland and Wales over 24 hours.<br />
<br />
I'd been training for the hike since January, with a combination of gym work, running and long hill walks. Having completed the Yorkshire Three Peaks in April I was fit and strong and far more ready than the last attempt. And I started out with a bang, even surprising myself at the pace I was keeping with the group into which I'd been placed. As the terrain grew steeper, I slowed but kept my cool, took it down a notch and steady on. Lungs burning a bit but even pacing and uncomplicated terrain made it manageable. The leaders got away but I was still going at a good clip.<br />
<br />
I was feeling great until we rounded a corner and now I'm looking up at a steeper, more complicated scramble up uneven steps. If you've climbed anything you know it's easier to stick to a slow incline vs steps so I was trying to pick out the lesser of the two evils. Along the right was a dirt track - perfect terrain, but with a drop straight down the side of the mountain. Just one look and my breathing went to hell - I couldn't move away from that edge quickly enough. I thought of my boy at home, the words of my husband 'if you don't think you can do it, just stop, do what you have to but be safe'. And that path didn't equal 'safe'. In retrospect, I think I may well have been hyperventilating. At that moment, I was fearful. The realisation that I was being rushed up the side of a mountain, this was dangerous, one false step and there's a motherless child at home, well that didn't bear thinking about. Still I kept moving.<br />
<br />
As I picked my way up the steps, my breathing grew even more ragged. A sure-footed and far braver friend was climbing with me, and having been well in front came back to check to see how I was. With the warmth of the day I assumed my struggle was down to overheating so she got my bandanna wet and I felt a bit better but still ridiculously uneasy.<br />
<br />
Onward I went, still many others passed me. I dug deep and somehow managed to bind up that fear, pack it away and get beyond it. Until a sudden voice in my ear jarred my concentration.<br />
<br />
"This pace is ok," said he, "but if you drop any slower we my have to turn you around at the waterfall."<br />
<br />
You're too slow. (Better off dead.)<br />
<br />
And there was the turning point. That subconscious memory. That box. That box. Throw away that goddamn box. Piss off with your low expectations.<br />
<br />
I said "ok" (like hell you will) put my head down (here we go again) and got moving. Underestimated, just like Yorkshire. I couldn't believe it was happening. Again.<br />
<br />
In my head 'this is so dangerous, please don't fall' was at raging battle with 'you must hurry, they want to bloody stop you again. Go go go.'<br />
<br />
I pushed myself to the absolute limit, til at least an hour later I spotted the group of people stood opposite the waterfall I had been chasing. Don't make that checkpoint, they take my summit. They'll stop me. The fear in my guts fell over the side of that mountain and I absolutely launched myself across those slippery stones.<br />
<br />
"Have I made it?" Gasping. Red faced from exertion and anger.<br />
"Oh yes, plenty of time."<br />
<br />
You rotten, heartless sons of bitches.<br />
<br />
(Better off dead.)<br />
(Why do you bother? Go ride your sofa. You're too slow.)<br />
<br />
As it happens, we made that summit. But the way down was full of those very same steps, and that fear came back with a vengeance. Don't slip, don't slip. Be careful. Yet there was no time to sustain it, we had to keep moving. I found myself taking risks I had no business taking, at one point actually barging past people who were just out there to enjoy the mountain. I hated myself at a few points for being so brash, so hurried, so agitated. A long sandy stretch and now we're actually jogging down. I looked around, this perfect sunny day, views up to forever and I'm running down a mountain. This was certainly no way to see Ben Nevis. At one point, I fell over. Cursing. Cursing, all the while. Stood up, brushed off, kept racing down, down.<br />
<br />
My final clock time was about 5 hours 19 minutes. I'd climbed Ben Nevis in 5 hours and 19 minutes. Still that wasn't good enough, I was supposed to do it in 5. Was I? Ok then.<br />
<br />
I wouldn't finish that challenge. I was slower than most everyone else.<br />
I wouldn't finish that challenge. I was put in the box titled 'non-finisher'.<br />
I wouldn't finish that challenge. I was underestimated.<br />
<br />
To hear 'DNF' announced in your ear at the end of the day isn't pleasant. But it came with an asterisk: I did not finish because I wasn't allowed to do my own thing.<br />
<br />
That fear of being timed out for the duration, of being excluded, of failing, all piled up together cost me my challenge. A hard landing down a step on a right knee already weakened by the tiniest of injuries weeks prior finished my hopes. 20 minutes up Scafell Pike they stopped me from continuing to the point I'd requested to stop myself. The detail now so far in the past, that anger now so pointless, I've thrown most of it into the wind, but I will say I heard over the radio this statement by a 'guide':<br />
<br />
"Take those steps at a good pace, so if the three in the back fall behind, you can turn them around."<br />
<br />
Set them up to fail.<br />
<br />
(Better off dead. Go back home, you aren't fast enough.)<br />
<br />
Light 'em up.<br />
<br />
_____<br />
<br />
<br />
For at least two weeks after that 24 hour period, I burned with a fervor. And I couldn't pinpoint why the experience upset me to the very marrow. But it did. And now I know why. And now, so do you.<br />
<br />
Here is a little boy. This little boy is better off with us. In life, and very much alive. Still I know that when he gets older people will be afraid of him - and they won't quite know why. I've seen pregnant women look at my son and wince. Just the same as I've seen people pity clapping me over finish lines, telling me to keep going, you'll get there! And when I do, the bunting is down, the band has packed up and everyone has gone home. And they're always out of bananas. But Rukai and I have something very much in common, and that thing is what drives my every breath: there will always remain a line that we both seek, a point 'out there' to which we run and crawl if we have to, a line that is always ridiculously hard to capture. But that line will always be crossed one way or another. In good time.<br />
<br />
Because you see, as it happens, life is not actually about speed.<br />
<br />
Life is about conquering those fears, challenging that status quo, attempting things that you are not good at just because you're not good at them. It's about smashing challenges you are terrified of and trying again when you need more work than most to succeed...whether it's climbing a mountain, finishing a marathon, or giving birth to a child whom society will view as 'broken'.<br />
<br />
The true consequence of Fear is unfinished business. It is separation. Impatience. Fury. Angst. Sorrow. It is broken societies with impossible expectations and the inability to care for its most vulnerable members. It is eliminating people from existing because you don't know anyone else like them, and that lack of knowledge scares you deeply. We fear that which we do not understand.<br />
<br />
The consequence of Fear is a slow slog up a dangerous path. Pointing our feet towards the top of a mountain that some people would never have us reach. But one day we WILL summit. We will fly our flags and raise our arms in victory. We will look down at those who follow behind and together we will lift them up that hill.<br />
<br />
Until then we will keep climbing, unafraid.<br />
<br />
Light 'em up.Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com6tag:blogger.com,1999:blog-195981949747094692.post-1602475630121803162017-06-02T11:06:00.000+01:002017-06-02T23:52:24.773+01:00For I am not finished adoring you.Oh morning, how I do sometimes despise you. This one possibly more cathartic than most, this one with a door creaking open, quietly, quietly now, don't wake him up. He's tired. From all that fun and play and half term holiday, tired.<br />
<br />
From all that "I couldn't <i>possibly</i> go to sleep now, we're in a hotel and my mummy's just beside me" tired.<br />
<br />
From all that "What is this ten pin bowling lark, and let's ride roller coasters and half term shenanigans and sightseeing on great ships with stories of great warriors" tired.<br />
<br />
(There had been mama, hoping against hope that her great warrior was paying close and careful attention. How to shine. How to command. How to lead. How to triumph.)<br />
<br />
Ah, but he is no follower! <i>We</i> follow. We all follow. Go son.<br />
<br />
Go.<br />
<br />
Now today there he lay, pre-sunrise, a similar golden ball of light in waiting, this perfectly imperfect boy (like us all) oblivious to the fact his mother was silent and enamored and treasuring him from the doorway. Oblivious to the fact that she was thinking 'my God, when did he fill that bed? Why is there no space around him?' A glance to the moses basket in the corner, now stuffed with teddies when years prior it had been full of baby and baby's grunting and random cries, "come get me, cuddle me, I need you".<br />
<br />
<i>I need you</i>.<br />
<br />
That very tiny moses basket now only near his feet. Holding his baby doll when it once held his mama's baby. When did you get so big? Sure, you are larger than life, but when did you get so <b>big</b>?<br />
<br />
I blow a kiss and he stirs. As if he feels it land and stroke his cheek, it pushes him to turn over. His hand floats up to rub that cheek, now his forehead, now to scratch that toddler pot belly which just won't go.<br />
<br />
Good.<br />
Don't go.<br />
Stay.<br />
<br />
You stay. Let's hang out here for a little short while, for I am not finished adoring you. I will never finish adoring you.<br />
<br />
Don't go.<br />
(Go. Fly! Go!)<br />
Don't go.<br />
<br />
I close the door and go to dress and brush teeth and tie shoes and ready myself for my day. It is now that I'd typically leave for work but that beautiful little boy won't be back in that bed til Saturday night and I just can't go. Not yet. I turn back for one more look. I can't close the door, can't pull away. To hear his breathing is like a symphony, the song of life that brings me life. This boy. This beautiful boy. My pride in having actually <i>made </i>him. What a miracle.<br />
<br />
<i>My</i> boy.<br />
<br />
This hand on the door holds me still, watching one boy, my boy, life's boy, our boy, stir and snore and scratch and roll and <i>be</i>. Oh the blessing of this child! The love! There has never been such love. I am sure of it. Nevernevernever.<br />
<br />
Never.<br />
<br />
(And when did you get so big?)<br />
<br />
I have been suffering lately behind my eyes, that darkness has seeped into my guts, embalmed my soul, clouded my spirit, rained on my hope. I have been unable to decipher why, but yesterday maybe at long last I knew. I realized that my beloved sweet baby Rukai, my heart, my world, had gone. There came little boy Rukai, with a new attitude, often crabby, feisty, frustrated, annoyed. Where did my sweet boy go?<br />
<br />
Where? Out. He went <i>out</i>.<br />
<br />
Into the world is where he went. And not that this isn't a good thing, but when he went out I seem to have forgotten to give him the map to find his way home. I forgot to watch him go and I forgot to pack him a lunch and I forgot to wait for him at the door. Because I never thought he'd be going so soon. We had planned to wait another year. We weren't allowed that year.<br />
<br />
And so I wasn't entirely paying attention to the fact that there was a huge part of this brave new world which required me. Which will always require me. I forgot how much he needed me, but perhaps how much more I need him. I forgot. And here he's been reminding me and here I've been frustrated and stressed and confused by his behavior because, quite simply: I've not been paying enough attention. The tug marks on my trouser leg, apparent. Chocolate stained fingerprints. Sticky with despair. Mummy? Mummy? Please mummy. Come here mummy. Please.<br />
<br />
Mummy.<br />
<br />
I <i>need </i>you. Don't go.<br />
We used to always be together. Don't go.<br />
Where have you gone?<br />
Don't go.<br />
<br />
And there my world has felt empty but my world has really just been right before me, tugging at my sleeve, pressing my cheek to turn my gaze in his direction. Bringing me the remote and signing 'again mama'. Clasping my hand beneath his arm, walking me to the sofa and signing that I should sit. Sit to watch him dance. To cheer him on. To smile. To laugh. To love.<br />
<br />
To not forget.<br />
To mother.<br />
<br />
As if life isn't complicated enough here it has tried to cleave us apart.<br />
But I know the glue.<br />
It is called Love. Patience. Respect. Pride. Anticipation. Joy. Light. Tomorrow.<br />
<br />
The glue is called Rukai. As it was and as it always will be.<br />
The glue is called Us. As we are and always will be.<br />
<br />
Go.<br />
Go.<br />
Go.<br />
<br />
Together, we go.<br />
<br />
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<br />Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-42299108675529531112017-05-09T01:09:00.000+01:002017-05-09T02:50:20.998+01:00Boomerang: Life, challenged.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><i>http://bit.ly/2pp6HfF</i></span></td></tr>
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How do I write this? I've been trying to write this for weeks but it won't be written. How do you describe a void? How do you illuminate a mask? The perfect mirror of comedy and tragedy? Brothers. Twins. Yin, Yang. Life, challenged.<br />
<br />
I will make it start by saying that right now, I am broken.<br />
I will make it start by saying that in November 1999 I threw a boomerang which has since returned.<br />
I will make it start by saying that I caught the bastard.<br />
<br />
This boomerang is coated with a greasy, oily thing called 'stigma'. This stigma is the thing that's making it hard for me to write this, because what I'm talking about is officially classified as 'mental illness' but because I hate labels we will just call it 'feeling despondent and miserable for so long I'm going for help. Again.' Tomorrow. If you feel that is a weakness, scroll on. You have no place in my world. Otherwise, you get me. Here we go.<br />
<br />
It's currently some form of mental health awareness week, which in and of itself is a bit of a ridiculousness, as we should always be aware of our mental health and in particular when it's gone down the shitter. And I know this old fool called Depression because she and I used to hang out and we even had someone formally called 'Doctor' to whom we went for some offloading and some medication for many months, many moons ago. Eighteen years, in fact. Back when I fired Depression off on that boomerang, thinking it was a slingshot but I was wrong and here I am holding it in my hand again and it burns like blistering fuck. One minute I'm laughing at how unbelievable it is that I'm back in this horrendous place, the next bawling, the next shouting at someone, everyone, anyone. And I pity myself.<br />
<br />
And I hate pity. But God, who should feel this low? This high? This messed up? This lost?<br />
<br />
And the worst thing about it all is how deeply I've been feeling that this is something I must not reveal. Because the cause of my depression centers around caring for my beautiful son. I'm inside out lately at the great mountain we climb as a family every single day. At the struggles he faces, at what extra we must add to our day to support him to make a small hint of progress. At the sheer frustration he expresses at that pace. Don't you DARE tell me he doesn't understand. He does a plenty, and he is livid when he can't do something he wants to do. Every step is over such a chasm. And what in God's name is going to happen to him when we are gone. My heart splinters every day. It cannot break anymore, because there won't be anything left, and what would I be to him then?<br />
<br />
But I AM revealing it because it is a simple fact that just because you struggle with a situation does not mean that you wish it away.<br />
<br />
Read that again, I'll wait.<br />
<br />
My son is five and does not speak.<br />
He cannot always tell me what he wants, only what he does not want.<br />
I try so hard to decipher every sign, every shout, every attempt at language.<br />
<br />
I try. He gets frustrated and shouts. So do I.<br />
<br />
It's all such an oversimplification of everything that's going on right now, but the bottom line is, I need help. I have done everything possible I can do to manage the stress but it's not working. I need help.<br />
<br />
But on no plane of existence do I wish he wasn't here.<br />
In no way do I wish he were not mine.<br />
<br />
I adore my son as much as any other mother adores hers.<br />
<br />
And that is why I AM seeking help. He deserves better.<br />
<br />
I see jokes about how much toddlers talk. They destroy me. My world for an 'I love you mama.' He mirrors it with sign. He hugs and cuddles. But words! Words! I had no idea how much I need words til I heard none. And no one out in 'the world' is doing enough to make them come, barring his TA. Speech therapy has abandoned us for administrative overhaul (as if there were anything there from the off). I want to fix it all but I don't know what to do. I want to control it all but it is all out of control. He progresses a little every day but he is not allowed 'a little every day' in life. Life has taken him off me and me away from him.<br />
<br />
Life. Life is a four letter word. The very king of them all.<br />
<br />
Life will pass him by and I can only sit and watch him, furious and pissed off and determined, try to catch up. He will bust his ass because he is Rukai. He is mini-me. I can do nothing more to help him reach his potential. And that potential is huge.<br />
<br />
But I cry because it kills me that he has to struggle for every bloody thing he does. I die a little every day. I want hope. I see so much hope tiptoe in the frame but it doesn't break bread with me or hang about in my lounge and then I lose it again. And then this darkness owns me and I can run til the cows come home but it's never enough. The boomerang lands in my palm again. And I fling it. And catch it.<br />
<br />
And fling it.<br />
And catch it.<br />
<br />
This road is so slow. If you really know me you know I live for slow but this - THIS is no road, it is quicksand. I have struggled in silence for five years because the very same people to whom I would turn for help are those who would prefer that he did not exist at all. And I won't give over control of any of this to them. Push. Pull. Tug of war. Tug of love.<br />
<br />
Tug.<br />
(Dig.)<br />
Cry.<br />
Tug.<br />
<br />
Rukai doesn't belong to you, he belongs to Rukai.<br />
<br />
A couple days after Rukai was born, I found myself wailing in the shower. Not because he has Down syndrome, but because I loved him from seeing those two words on a stick '2 weeks'; I loved him totally from his absolute beginning. And there looming over us, with all their dictatorial instruction and off the cuff nonchalance were those people who would try to own him and tell me what he would need. They who would tick boxes and make note of how we 'appeared to have bonded with our son.'<br />
<br />
In spite of WHAT? Of course we bonded with him, he is our son. Our blood. Our firstborn boy.<br />
<br />
Yet I am still broken.<br />
He needs me whole.<br />
I'm going for help.<br />
<br />
There is no shame in asking for help. So I ask.<br />
<br />
So I ask.<br />
<br />
And there I throw that boomerang again. <br />
<br />
#MHAW17<br />
<br />
EDIT: If you have read this and feel anything, please say something. I don't write to make people think, I write to foster change and change starts with conversation. Don't be afraid to talk about this. I'm not.Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com18tag:blogger.com,1999:blog-195981949747094692.post-27459638653710066952017-03-18T22:54:00.001+00:002017-07-07T11:03:01.027+01:00I cannot do this alone. | World Down Syndrome Day 2017<div class="separator" style="clear: both; text-align: center;">
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The wheel has turned round for a fifth time since Rukai joined humanity and here we are on the cusp of another World Down Syndrome Day - this coming Tuesday, March 21st. 'Yeah, rah rah, so what?' says you. 'What on earth can you tell me that you already haven't?'<br />
<br />
AHA!! There's the rub...<br />
<br />
I can't tell you a <i><b>thing</b></i>.<br />
<br />
I can't tell you a thing, because just as I predicted five years ago, Rukai is pretty much exactly like any other kid, and there's only so much clinical jargon I can hurl about when it comes to the condition which is supposed to make him a gargantuan anomaly.<br />
<br />
But (and you know where this is going) he's still <i>not</i>. He's a kid. A five year old boy called Rukai. He is no monster. He is no one to fear, nor to pity, nor to discard.<br />
<br />
A kid with possibility. A future. Feelings, and emotions and a distinct, raging lack of opportunity lain before him because he has a learning disability.<br />
<br />
That is what is to be pitied.<br />
<br />
But I digress...<br />
<br />
Of Rukai, I can't tell you a thing, other than to ramble on about what he has learned, how he's developed, how much more deeply he's embedded himself into my heart - a heart which in size is quite pathetic in comparison to his own. That little, huge heart which begins at 'delight' and ends at 'joy'. That heart which loves first, questions and answers all in one breath and has only one demand which is to light up. To elevate. To soar.<br />
<br />
Rukai does not <i>do </i>self pity.<br />
Rukai does not <i>do </i>jealousy.<br />
Rukai does not <i>do</i> hatred, or envy, or malice.<br />
<br />
He sure does crabby and stubborn and annoyed, but the <i>real</i> dark stuff? No. There is only light here.<br />
<br />
And this is a <i>problem</i>, how?<br />
<i><br /></i>
Today I saw a clip of some televised interview where the subtitle still referred to my child as a subspecies of humanity ('Down's baby') - those poor dejected uneducated little editors or producers or whomever's job it is to categorize human beings throwing that phrase out as they'd throw my boy out, without any inkling of what they're missing. The presenters' discomfort palpable, no idea where to look or what to say other than 'he's so cute!' while desperately clock-watching for the ad break to kick in.<br />
<br />
Pah.<br />
<br />
But I know better.<br />
So many of us know better.<br />
And as God is my witness, I hope that with all my nattering for half a decade, with all my angst and anger and fear and upset and triumph and compromise and adjustment, with all those things...<br />
<br />
I hope YOU know better, too.<br />
<br />
Unless you want a full run-down on every milestone Rukai's hit,<br />
Or every holiday we've taken,<br />
Every party we've attended,<br />
Every school day we've enjoyed,<br />
Every dance class we've loved,<br />
Every friend we've made,<br />
<br />
I can't tell you a thing.<br />
<br />
Because what I'd say would be so typical, so ordinary, so NORMAL, that it would bore you to tears. But out there in society, there is such an undertow about this condition, the misinformation churning, threatening, sucking people under the mire of falsehoods, of confusion, of gut-wrenching fear.<br />
<br />
Lies, lies and damned lies.<br />
<br />
Yet here I sit, pounding away on keys that have so many stories hidden within them. I know the past year has been difficult for the Ds community, in terms of political tides, so-called medical 'advances', those things which, prior to having Rukai, I would have welcomed with open arms. A non invasive pregnancy test which would have detected his Down's syndrome so early I'd have had LOADS of time to make a horrendous choice.<br />
<br />
Just over five years ago I may have taken it. Because I only heard what Medicine was saying: 'Problem.'<br />
<br />
I only heard what Society was saying: 'Disaster.'<br />
<br />
I only heard what Fear was saying: 'You can't handle it.'<br />
<br />
And today, five years on, I answer them all:<br />
<br />
Joy.<br />
Fortune.<br />
Stronger than you think.<br />
<br />
I won't kid you. Life is HARD.<br />
But I won't kid you. Before Rukai, life was <i>harder</i>.<br />
Because before Rukai I didn't have unconditional love.<br />
I didn't have someone who was like a sponge, eager to learn and sharp as a tack.<br />
Although he takes longer to learn, he does learn. But more importantly, I learn.<br />
<br />
More still, <i>you </i>learn.<br />
<br />
So now that you've heard me for that half decade,<br />
Now that I've written those words which stick in your craw,<br />
Which jab you like a sharpened elbow in a shopping mall,<br />
Which poke you in the eye like a wayward airborne cotton seed,<br />
<br />
<i>Take </i>them.<br />
<br />
Take them in,<br />
Pack them up,<br />
Wrap them in a tight bow,<br />
<br />
And give them away.<br />
<br />
Go ahead and teach someone else. Tell them. Help them see. Help them understand.<br />
<br />
Down's syndrome is not a disaster. It is a difference.<br />
People with Down's syndrome are <i>people</i>. They are not a malfunction. They are not a flaw. They are not a problem.<br />
<br />
They are not 'They'.<br />
<br />
Rukai is my son.<br />
Rukai is my heart.<br />
Rukai is my world.<br />
Rukai is a <i>person.</i> He is not 'Down's syndrome'.<br />
<br />
Since the day he was born I made a promise to him, in that cold hospital room, listening to Adele singing about a fire starting in her heart, mine was blazing too.<br />
<br />
'I've got your back,' I whispered. 'Welcome to the world, little man.'<br />
<br />
If you're reading this,<br />
If you're feeling this,<br />
If you care about this,<br />
<br />
Take it and TEACH. Welcome him to the world once and for all.<br />
<br />
I cannot do this alone.<br />
<br />
#WDSD17<br />
<br />
<br />
This post also appeared <a href="https://themighty.com/2017/03/down-syndrome-community-allies/" target="_blank">here</a> on The Mighty and <a href="http://www.huffingtonpost.com/entry/i-cannot-do-this-alone-why-allies-matter-to-the-down_us_58cdf34ce4b0537abd9571a5" target="_blank">here</a> on The Huffington Post.<br />
<br />
<br />Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-72880669291756110452017-01-22T13:52:00.000+00:002017-01-22T14:21:20.290+00:00Let it snow.Funny - aside from the newly sworn in president and his press secretary creating imaginary crowd sizes and moaning to the CIA, I didn't see anyone crying yesterday.<br />
<br />
I didn't see anyone whimpering, saying woe is me, it's so UNFAIR! SAD!<br />
<br />
In fact, where I was stood during the Women's March was so crowded that I saw little else than a sea of humanity in front of me, behind me, on all sides. Amidst those buildings and monuments which stand proudly as the central focal points of my first country's great capitol city, surrounded by men, women, children, grannies and grandpas of all colors and social standing, from countries around the world and cities around the country, speaking loudly or forever holding their peace, there we stood, there we rallied. There we marched.<br />
<br />
We special snowflakes, not crying. Determined.<br />
<br />
Not crying. Focused.<br />
Not crying. Optimistic.<br />
<br />
Let it snow.<br />
<br />
Without animosity towards one another.<br />
With renewed hope for the work that lies ahead.<br />
With fierce determination to stand up for what we believe in.<br />
<br />
Let it snow.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijZJeHZ7rMW_Nc86gyhNQ9z_2II9wBcovFzXLhwmkFr3g3BbIHRkjVPiHfMg3nsuE_qBP7PPre46xWlt5zbeOFk-SwV-qzrss0wVq8LyvFiem51XQHc_2lcoLtWX9i43P_zuzi-U9tQtTm/s1600/march.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijZJeHZ7rMW_Nc86gyhNQ9z_2II9wBcovFzXLhwmkFr3g3BbIHRkjVPiHfMg3nsuE_qBP7PPre46xWlt5zbeOFk-SwV-qzrss0wVq8LyvFiem51XQHc_2lcoLtWX9i43P_zuzi-U9tQtTm/s320/march.jpg" width="204" /></a>I traveled a hell of a long way to be there but was immensely pipped by one of the magnificent women I met on leaving the hotel. As I bounded out the hotel door armed with all my supplies, a giant poster, and deep belief in the importance of what I was about to do, I waved a fleeting good morning to three women in those ubiquitous pink pussy hats who looked as if they were waiting on a taxi. "Have a great day today!" Everyone smiled, and I kept going.<br />
<br />
The doors closed behind me and I got about four paces, then thought what the hell am I doing? I turned heel and went back in. "If you're waiting on transportation to the march, I've got a rental car outside with just me in it - want a lift?" Next thing you know we're all in the car chatting away and I learn one of my new friends has come in from Japan to join her mom and sister, from Oregon, in the march. Yes, I've found my tribe for the day. And what a day.<br />
<br />
We parked across the river and made our way on foot. The approach to the rally point took us past the Iwo Jima Memorial, Arlington National Cemetery, the Lincoln Memorial, the Washington Monument. Past purpose. Past history. The thought "what the hell am I doing in Washington?" never crossed my mind. We met people on the way, exchanged stories, home towns, reasons for being there. Mine usually ended with a smile followed by "I couldn't stay home and do nothing."<br />
<br />
Let it snow.<br />
<br />
As the crowd grew and the cell phone service fell into the rabbit hole, it became apparent that this was no ordinary rally. On our initial approach we'd heard Gloria Steinem, later Michael Moore, and later particular thrills for me were Tammy Duckworth and the immense Van Jones. But Tamika Mallory's poignant and jarring "welcome to our world" along with the exquisite six year old Sophie Cruz...oh we <b>heard </b>you. Loud and clear.<br />
<br />
Then they announced that we'd started marching and we're all looking at one another stood in place as one more speaker after another took the mic, no marching to be seen aside from us dancing from foot to foot. My back was starting to stiffen up from all the milling around so I did a bit of a do si do with the woman next to me to the beat of a drum somewhere near us as the crowd starts chanting "March! March!" and we shuffled a couple steps then stopped again. <br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdvkDtg_Lg27yZM2odKHiEkSp20BB2v8dnfbXkbZuDsQFFnK0911YnfXFCm98O-A3b8rHObmPFHAJvDXmqJ6JTbWvmLGIy0eoZ2QbDwHViWL2HwtyRb-H6sGsMaYSCOXbr3auHpzQfjhDl/s1600/20170121_130110.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdvkDtg_Lg27yZM2odKHiEkSp20BB2v8dnfbXkbZuDsQFFnK0911YnfXFCm98O-A3b8rHObmPFHAJvDXmqJ6JTbWvmLGIy0eoZ2QbDwHViWL2HwtyRb-H6sGsMaYSCOXbr3auHpzQfjhDl/s400/20170121_130110.jpg" width="400" /></a>Must have repeated this about three or four times before we finally got moving and paused at one of the giant screens when the impromptu Madonna curse fest and concert began. As we discussed how horrendous it would be for the media coverage of this amazing event to focus on her, we turned to catch up with the tail end of the crowd that had started moving, some 50 meters from the end of the road. There may have still been fifty to a hundred thousand people still to follow. Chanting everything from "Tell me what Democracy looks like? This is what democracy looks like!" to "Keep your tiny hands out of my underpants!" There were people climbing trees to get a better view of the crowd, folks passing up their cameras to capture that moment on film. We are HERE. We are EVERYWHERE. Hate loses. Love wins.<br />
<br />
Let it snow.<br />
<br />
As we rounded the corner I caught glimpse of just how enormous the crowd was and broke out in goosebumps from head to toe. By that point we'd been on foot for about five hours. Spotting a gap in the gates, we made our way towards the Washington Monument. Crossing the grass we turned to look, once again absolutely flabbergasted at the enormity of the crowds filling up the roads and pathways in every direction. We took some pictures then headed up the path.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYBUG5Bi57tYIgaY2pEJxKds9FntoTHJg2dgZkrFpVUOCAUTsMcV54WNsAutbkjSC35pBKZFp6X-QSgB0qNCa-FgocrBe-LNRfd8EyVbimiHB_SOYklghns-jrcptydLuWXjRZstJAHZ2s/s1600/20170121_160025.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYBUG5Bi57tYIgaY2pEJxKds9FntoTHJg2dgZkrFpVUOCAUTsMcV54WNsAutbkjSC35pBKZFp6X-QSgB0qNCa-FgocrBe-LNRfd8EyVbimiHB_SOYklghns-jrcptydLuWXjRZstJAHZ2s/s400/20170121_160025.jpg" width="225" /></a>A crowd had gathered around the Washington Monument, so I peeked through the wall of legs up on the elevated grassy area. There lain out was a giant canvas replica of the Constitution adorned with signature after signature. It reminded me of the Cubs wall in Chicago. I asked a boy to help hoist me up on the bank, found a Sharpie and made it known that the Sindas had come. Over an ocean to protect what future awaits my very special son, I had come.<br />
<br />
Let it snow.<br />
<br />
It's now the day after the night before. Flight leaving in about ten hours, I've come and done what I had to do and I'm leaving with a full heart and zero regrets. I needed to come here and be surrounded by that wall of people who feel equally horrified by what's happening in this country and who will now get to work on doing something about it. <br />
<br />
As for me, I will most certainly start making the necessary phone calls when called upon to better support those back home who are fighting for us. As I'm headed back over the ocean, I'll do what I do best - keep talking. My words are my best sword and my son is the 'king' for whom I wield them. My votes are my beliefs and I will continue to cast them in both home countries for politicians who don't gloat in victory, who don't discount people's real fears, who don't de-value and marginalize entire demographics. People who work to make the world a kinder place. A fairer place. An equitable place.<br />
<br />
These are certainly dark days for America, and so for the rest of the world with such an alarming America. But yesterday, a blizzard fell across the planet. Long may the winds of righteousness blow.<br />
<br />
Let it snow.Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0tag:blogger.com,1999:blog-195981949747094692.post-66018073000515484562017-01-20T00:06:00.000+00:002017-01-20T08:34:29.075+00:00Winter is coming.I'm sat here in a relatively tattered hotel room drinking red wine and unsubscribing from a slew of social media accounts belonging to the current President of the United States. This point-and-click session is oddly cleansing and comforting, knowing there is nothing to come from the next one that I'll want to see on a regular basis - you see, I have one child at home already. He, too, can be petulant and think everything he wants but doesn't get is just NOT FAIR!<br />
<br />
But mine's 4. Equally small hands, tho.<br />
<br />
And mine's got Down's syndrome. Mine will probably never be President, but with his perfect pure soul, his innate empathy and complete lack of hate and self-absorption, he sure as hell should be. He is half American after all. He works hard, he's clever, and people who aren't hostile to one another truly adore him. He'd have my vote, but then again, I'm entirely biased.<br />
<br />
Hours ago, I left work after Skyping my husband and that beautiful son, signing "good night, I love you" through a computer screen when otherwise I'd have been doing this in person, next to his bedroom door, arms still warm from the last blissful cuddle of the day. I haven't been apart from my sweet Rukai for more than a single night since he was a year old, when I went back home to the place where I was born, home to do something important. There hasn't been anything that important until now.<br />
<br />
But tomorrow I'm going home to march. Not during the inauguration, oh no, avoiding that like the plague. But for Saturday's Women's March on Washington, you can count me IN.<br />
<br />
Because a country's leader should not be talking about grabbing women by the pussy and trying to pass it off as 'locker room banter'.<br />
<br />
Because a country's leader should not be mocking disabled people and gaslighting detractors when that behavior is challenged.<br />
<br />
Because the leader of a country made of immigrants should not be building walls and alienating entire religions to keep immigrants out.<br />
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Because hatred and racism and misogyny are not American values.<br />
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Because confrontation is not what brings people together.<br />
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Because referring to oneself in the third person is not NORMAL. Because none of this is. And I will not normalize it.<br />
<br />
Not my President.<br />
Not my America.<br />
Not my values.<br />
So I'm going home to march. I'm flying from London to Washington, from one home's capitol to the other, to stand shoulder to shoulder with my fellow patriots. To remind that new government that the world IS watching.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh42sbY5xrac1uUJCKAsPOVuV8OJvuUcohIRN8YkExJiCaUwTq6OESFoPQs6JKVargungfx15pPQv9udyCK1D1cOeUv-0I99tUv9JJd3jcUyM2r4r-cH9sr8-VBK7B8WPv4MZvQQ5ce60Fj/s1600/winteriscoming.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh42sbY5xrac1uUJCKAsPOVuV8OJvuUcohIRN8YkExJiCaUwTq6OESFoPQs6JKVargungfx15pPQv9udyCK1D1cOeUv-0I99tUv9JJd3jcUyM2r4r-cH9sr8-VBK7B8WPv4MZvQQ5ce60Fj/s320/winteriscoming.jpg" width="310" /></a>The day I found out about the Women's March from a friend's Facebook post, I immediately turned to my husband and said 'I'm going.' He didn't even flinch. Because he knows. And were he the marching type he'd be there too.<br />
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As for those supporters of his calling us snowflakes? Well it's snowing alright. Plenty of beautifully special snowflakes on the move now, crystalline originality, now gathering, gathering, falling down the roads and lanes across America. Across the <i>planet</i>. Taking to the skies and the sidewalks, past those monuments to <i><b>real </b></i>leaders named Washington, Lincoln. Working their way to a great gathering. Stirring life's passions and focus and purpose into one HELL of a nasty blizzard.<br />
<br />
Here, too, Winter is coming.<br />
<br />
Get ready for the storm.Maxine Sinda Napalhttp://www.blogger.com/profile/01963256306163054818noreply@blogger.com0