Sunday, 28 February 2016


Oh you do know how to drag me out of the depths, young son.

Just yesterday I was briefly chucked back into that hateful, Dark Place. The one I haven't been in ages, because it's just been us and Life at the Speed of You and mostly smooth sailing lately. Our optimism and our 'normal' run this show, but every once in awhile it hits me like that anvil falling on Wile E Coyote's head and I'm shocked into submission. Nothing pisses me off more. There you sit, being the amazing kid you are and something threatens to dull your shine.

Not on my watch, matey.

Like a whirlpool had grabbed my ankles, I got sucked into that place, the one where I'm still angry at outsiders who don't show you optimism but instead rank you and rate you and chart you and place their societal limitations on you. I got there because every time I let my guard down their attitudes seep into my thinking. I cannot stop it because it always blindsides me.

And nothing pisses me off more.

I saw you unable to do something that chronologically by age, for all intents and purposes, you should be able to do. But you couldn't do it. And I counted...well, I counted YOU. I gave you a number. Like a prisoner, a criminal behind bars, I mentally took your progress and your actuality from you and replaced them with a number. A 'developmental age' number. Because that's what happens when THEY come in. They break me. Damn it.

Because as it's always been, when it's just you and me and your Daddy, we are on the MOVE. We progress and we see what you can do and then we look for what's next, only what's next - not what's on a chart, a book, a guide, a notepad. We identify what can you do now and choose what we should work on next. We stack it up, like a castle made of that wet sticky sand that endures, like a brand new set of Duplo bricks not yet made loose by wear. We make sure you're ready for 'next' and when you are we know, and we DO and we MOVE.

But damn it if I didn't let them in last night. I let them break me and in retrospect I'm pretty seriously disgusted with myself. But mostly I'm sorry. Because I owe you more.

But here's the rub - I'm not sure that those people who skulk into my brain and yank away my pride in your achievements when I least expect it actually know the most important thing that they should know, which is this: you are dealing with a child whose family has great hopes and dreams for him to soar. These are not rose colored glasses we wear. We don't care about your charts because THIS is our reality. Our son has the same right to huge expectations as everyone else.

We don't see or register your numbers, your rankings and ratings because we progress at the pace of our son. Still, we come to you to ensure he has support because the System says we should. But real support lifts. Real support elevates. Real support nurtures.

Real support does not break. And when I think of the 'support' you provide, I feel shards. I envision rickety ladders lashed together across a constantly moving icefall, in a landscape above meaningful oxygen. Your version of support suffocates. It threatens. Do better. You owe it to everyone you serve.

And get the hell out of my head already.

When you rank and you subsume and you marginalize and you pity, you break us. Yet here, you will have seen that we don't need you to break us, because some days we actually are broken in spite of you. Without warning, we sometimes break ourselves and we have to rebuild again and again. Our lives behind closed doors. You don't see but I've just revealed it because it is everything.

Sometimes we break. Then we come to you once we're strong again but you go and dismiss us with accusations of 'rose colored glasses' and 'obstructive' and 'in denial'. You wind up and swing your scythe of negativity and lop us off at the ankles every time.

We are already broken and broken and broken yet still glued back together. Don't you realize this?

But wait.
Hang right on.

Here, in reality, in the day to day, like fractured bones, broken spirits heal. They heal when you pick up the pieces, and you compress all the fears, and the gargantuan efforts, and the extra support back into itself. Cast it in a bear hug and squeeze until the broken thing knits itself back together. Different, yes. Healed, yes. Weakened?

Not on your life.

Because once again - as it is always with our stellar boy - every time I get to the Dark Place, surrounded by that pile of shards that is my heart, he goes and blows my mind the very next day. It is pure magic - the empathy, the 'knowing', the joy by osmosis. The mom-and-her-son thing. I thought it would be amazing to have a son, but let me tell you, this is like that thought on a rollercoaster. Screamy delight. Leave your stomach at the top of the hill cos it's going to be a big drop and a raucous ride.

Just gotta ride it. Let your throat dry up and your hair fly and ride baby, ride.

So to my best boy, wah hey, BANG out of the Dark Place we arose today, didn't we, kid! You hoiked me back up with such a rapid succession of...well...success. A fearless unaided slide. Tons of walking and exploring on still wobbly legs, pointing the way ahead and demanding I follow. And I follow. Always, I follow.

Your sudden fearless engagement with zoo animals where last visit shouting and hesitant was the way forward. And the piece de resistance - that which was the first endeavor on a 'real' potty. By God, I'm elated over poo. To hell with your age, this is poo on a full sized potty. This is bliss. This is parenthood. This parenthood has no label, no timeline, no tickbox. This is pride in progress.

This is how you are indeed just the same as everyone else.

Unsurprisingly you.

I'm entirely on the other side of that Dark Place and what put me there was YOU.

You. The iron in my veins that drives me forward, giving me strength.
You. The roaring lion, pride of my Pride.
You. My every tomorrow.


When the bough breaks the cradle will fall, and down will come numbers.

Because you always stand tall.

Friday, 26 February 2016

Bring it, redux.


Good grief, I've only really gone and done it now.

Back when I said 'bring it', I didn't mean for the IT to be 'significant health adversity that will chew up my training plan like a dog with a slipper'. But lo and behold I asked for some form of 'it' and I have been delivered IT, slap bang over the head. A virtual ice bucket challenge full of IT. And lookielou, here am I stood on the cusp of March, and it seems February was a complete wash. Like standing in the middle of a torrential downpour wash. Like the scalding, scrubfest shower after an OCR wash. Like removing all the slop off your kid's mug after a face painting session wash. An entire month down the drain with the spiders and the soap scum, never to be seen or heard from again.

But at least the days are getting brighter, longer, sunnier...there's that mental thing again. Accentuating the positive, holding on to my purpose, my goal, that hasn't left. What's left is the time in which I have to prepare. Enter plan RRR4752. Or some such. Nothing is stationary. Even when we are too ill to move very much, somehow we keep on moving.

Mentally, we keep on moving. 23 days washed off the legs but the mental workout hasn't faltered. Real belief doesn't suffer illness.

So I had that bone rattling cough for three weeks, that cough which turned out to be a chest infection which clung over two courses of antibiotics. That cough which then revealed a longstanding minor asthma wouldyoubelieveit which was preventing it from going the way of the dodo. Wacky is as wacky does and there I am in my mid forties newly diagnosed with a condition most folks know about when they're kids. Where did I draw the short straw that says when I start running for fun and fitness, I discover just a touch of asthma. When I quit smoking nine years ago I ended up with (just a touch of) borderline T2 Diabetes. Rewind the clock, live sedentary and eat rubbish, smoke a pack a day and I was strong like bull. Am I in the Matrix? I don't know, the last steak I ate was pretty fricking delicious. It didn't taste like pink slop at all. There may not be a spoon but there sure has been a problematic cough.

Back to the lost month. Last time I ran was the 3rd. Twenty-three days ago. I'm training for a marathon taking place in less than 60 days and I haven't run in 23 days. Phooooooooo. (Cough.)

In the midst of all that coughing malarkey I ventured out for a walk, you know, 'trying to keep fitness up' and I had to stop after a mile and a half and SIT DOWN ON A PARK BENCH to catch my breath. A walk. An alarming walk. I faltered that day. I questioned all of it that day. Then I stood up and kept on walking.

But I haven't given up. I've counted days, I've re-planned, re-jigged, visualized, mapped out and checked how much time I need. Then I got the latest meds.

And pinch me now, here on day 4 of steroids and inhalers, whoa nelly I finally felt up to getting to the gym for some strength training yesterday. I won't go into how weak I'm feeling but holy crap, the illness has really affected me. Ok, just keep moving. Today I woke up with less cough but (are you serious) a ridiculously dry mouth and snotty head from Rukai sharing his cold with me.

Never mind. Never mind. Key words: less cough. Just keep moving.

Today I needed to go the mere five minutes up to the shops and back knowing I'd be carrying two full shoppers and I eyeballed the car. Then I reminded myself there are fewer than 60 days. I've not run in 23. Hells no, on your feet dear. Go. Now.

I got out and back with just a few chesty tickles. And wouldn't you know it, I may have just mentally crossed that finish line there and then. Bring IT. Bring it. I am not going to give up.

So after a month of IT, I think this is progress. I expect the meds to keep hammering away.
I expect I will get back on the road when I get back on the road.
I expect I will make it to the start line.
I expect I will finish.

Slow and steady finishes the race. Slow and steady is already my pace.

Bring. It.

Tuesday, 23 February 2016

Pride of my pride. | #TransatlanticTuesdays

#TransatlanticTuesdays is a collaboration between me (in the UK) and Kera who blogs at The Special Reds (in the US) - sharing our journeys in the form of letters to one another.

Links to play catch up are at the end of this post.

Dear Kera

Would you believe three weeks on I'm still coughing? As if life hasn't got enough challenges for parents, let alone parents of kids with extra needs, then we go and get sick ourselves and have to try and spin that extra plate. A visit to a specialist - third doctor in this conga line - may have pulled me over the crest of the hill with the single word 'asthma' and another handful of medicine, that which I hope does the trick at long last. Cos 'ain't nobody got time for that'.

This month has been Rukai's birthday month and like all three years prior, I had great visions of making him feel extra special for the duration. Alas the poor boy has been trying to get me well. His empathy shines like my own personal north star. His heart glows through every pore. He is magnificent and I feel so let down I couldn't be amazing for him. So through trial and tribulation, test this medicine, try that treatment, remain unhealed, frustrated, sad, I've kept plodding on til I find what works. I won't stop til I get a result.

Kind of like Rukai.

Which brings me to your latest question: what has been the greatest challenge Rukai has faced thus far, and has he overcome it?

Well, I could go on at length at THE challenge, that which is society's propensity to underestimate and marginalize him but I'm not on peak form so I will stick with an easy one. Ok, not for him to DO per se, but for me to talk about.


Ye olde hypotonia has been my little superhero's bugbear. Of all the issues he faces physically and mentally due to his Down's syndrome, that low muscle tone is like kryptonite for him. His legs, like mine, are strong, quite short, but solid as a rock. Never an issue below the waist, but move up and that core has been like shackles.

He didn't sit up unaided til 10 months. He bum shuffled his way around thereafter, throwing in a very surprising commando crawl one day that had me and my mother in law's eyes pop out and spiral - like the country cousin in that Tom & Jerry cartoon upon seeing hot kitty singing 'Oh wolfie, oh wolfie, ain't you the one.'

Ain't we got fun?

T gloriously captured video the very first few times he stood himself up unaided. The joy on his face was technicolor, rippling into the stratosphere, cripes I may as well have had the Aurora Borealis stood in the middle of my living room. Rare and brief. So he stood up. He beamed, he shone, he wibble wobbled. Then he fell down laughing and he stood up again. Laughing more. Exploding into his 'what-can-I-do-now'-ness.

And he stood again.
And again.
And again. Like every child on every last corner of this big blue ball, he pushed himself to get it right til he got it right.

There has been no therapy. There has been only Rukai.

There has been practice. Just. Like. Every. Other. Kid. On. Earth.

Success after practice. Not so very different after all.

And then there came the day I walked into nursery to pick him up, and everything changed. 31st of March, 2015. That March which came out like a lion. Roaring. Echoing across canyons and foothills and fells and blustery mountains. Ricocheting into diagnosis rooms and piercing holes through steno pad tick boxes.

That lion's golden mane, surrounding the pride of my pride, roaring. Here I am! Watch me rise!

Our wonderful team at nursery had quite a surprise for me. I sauntered up. Another Tuesday, just glad to get my dude and bring him home.

But oh no, not today. Today they answered the door and told me 'he's been walking all day'! And here I'm thinking this walking was of that 'hold-my-hands-I'm-not-ready-to-go-it-alone' persuasion. So I stopped in the doorway. I'm facing the rest of the staff, smiling proudly while standing in a crescent perfectly reflecting those smiles in front of him, for him.

I see his back is to me. He's holding hands with his key worker. And they take a few steps.

And then he let go.

3, 4, 5, 6 steps, no idea how many. I lost count through the wet eyes. But I could see that Aurora Borealis again. Twice in a lifetime, and here he was only 3. Let's roll.

And that room was the very definition of joy. Because they all knew from day one he would dig that out and all they had to do was give him the opportunity. Just let him be. This three year old holder of that condition which keeps telling him 'yes, yes, you'll do it some day' and his steely-eyed half Chicago half Mauritian grit looking it dead in the face and saying, time's up. Done waiting. Someday is today.


Coming up on a year later, Rukai's walking is still unsteady, sometimes still requiring the hand holding. We couldn't possibly walk to the shops or go out without the stroller, or the hip seat because there is always exhaustion and a needed rest. For now. This too shall pass, as they say. He will get fed up of the hand holding and put it down.

But we have added on 'dancing'. And the best little jog in place I've ever laid eyes on. It's more of a shuffle but he beams and that is all I need to know.

But as I live and breathe (only now 'just' breathing mind you ;-) ) there too will come a day when he will run. And jump. And skip and kick and bounce and hop and tumble and every last emotion will come out of me at pace, pouring from my pent up heart and that place in my head whispering 'what if'. I will see. I will burst. I will do all those things along with him.

Pride of my pride.

The day will come and he will let me know when that is. Until then, I will do my piece, saying my peace, on that societal thing. That's my battle.

Rukai will look after the rest.


I see you've been writing your hand off this past week, so here's another one for you for next week! Tell me about a time when you really believe you were only able to get through a difficult time because your support network circled the wagons and lifted you? Do those who supported you then really know just how much they helped you?'

With that I will leave you for now with warm wishes that all is well in your world. Thoughts of spring are keeping me going and I hope next time I write to you it is 'sans cough'.

Best wishes from the other side of the ocean.

Maxine x

Friday, 19 February 2016

When birthday plans go wrong.

Oh monkeysocks I am so sorry.

If only I could 'manage' everything we would have celebrated your birthday better, but unfortunately I've been coughing my head off for over two weeks and it just downright sucks. I know this is a problem for you, because although you don't yet speak you sign 'stop' like a boss, and you've been 'stopping' me for the duration. And I'm sorry. You should have been front and center all month and here I am making you worry.

I'm sorry I haven't been able to scoop you up and run you around like an airplane and make you laugh til you can't catch your breath. I can't really catch my breath enough to pick you up right now. And dammit you don't 'get it' and it breaks my heart.  You know something isn't right but you're not sure what that is. You are four and you should know but you don't. I can see the upset in your eyes. The confusion. I am supposed to fix everything in your world, yet here you are looking at me knowing I need fixing. And maybe you wish you could fix it. But all you can do is sign 'stop'. Stop. Please stop.

And that's cool and gut wrenching all at once.

I wish I could stop but my lungs aren't cooperating. And every time you want to cuddle, I wrap my arms around you as long as I can hold in the cough and I try desperately to protect you but I know that means it has to be brief and then I have to leave you, leave you reaching out for me and feeling sad about it all and I feel so horrid. Because you don't get it - maybe you think I really want to leave you but I don't. It is your birthday month. I wanted to lift you. To celebrate you. To honor you. And all I can bloody do is cough at you.

I love you and this relentless illness that's taken me over, here in your special month, here when we should be closer than ever, has put a chasm between you and me and my heart is in shreds.

I hope you had a wonderful birthday. In a couple days, we are going to celebrate your birth for the final time on this year number four, this final time with all those wonderful kids you've met at preschool, this final time in this year that I can't do my very best, but only my best possible. I want to be Thor for you. I want to be a wizard, casting spells of magic and wonder and everything should be perfect. Because you to me are perfect.

Sometimes moms get sick on your most special of days. This is the worst possible thing that can happen to a mom - at a time when it's expressly supposed to be entirely about you, to not be physically capable of making it so. To see hurt in your eyes. Now.

No no no.

I am so sorry. I hope you will remember how much I've tried. How much you are my world. My best boy.

There is nothing more that I want then to rub your back til you are asleep, stroke your hair til your breathing tells me you are settled, you no longer need me today and I can go do what mamas do when kiddos are sparko.

I want to pass on the most wonderful things I can to you, not the most dreadful cough. I cannot be near you because my health has currently shackled me elsewhere.

I cannot think of anything more gutwrenching that's happened to us so far in your full four years than this. I hope you know it's not intentional.

My heart is squeezing you tight. Tomorrow you will sign for me to stop. I will try.

More than anything I've ever done, I will try.

Monday, 15 February 2016

Get BACK, setback.


Well, I sort of knew it would happen and quietly glad it's now and not next month but here I am on week two of a technicolor chest infection. The bugger of it all is that it has overtaken me on the back of strawng - a cracking 12 miles, followed by a cracking 4.5 miles, followed by 'what the hell is wrong with my head, I'm feeling all woooooooozy' and lo and behold, blammo.

I might have known downing crisps with pints of Budweiser while staying up too late wasn't a particularly good nutrition strategy, but as I'd dodged the bullet so far, what the hell, let's go for it. Well, it went for me. It's currently winning. Good doctor has given me a sword in the form of an ominiously large horse pill, aka 'antibiotics that we hope WORK this time' because we have already been on a five day stint of what may well have been placebo. Fetched in the midst of a family holiday to boot. It's all so unfair. Those negative thoughts are creeping into my soggy brain saying 'oh noooooo you are going to fall behiiiiiiiiind, you will be weeeeeeaaaaaaaak' and to that I say 'piffle and balderdash, it's a chest infection and it will go. There's the door, don't let it hit ya.'

Then I go bury my face in a pillow and cry (and cough) and cry (and cough) til I get my five winks of sleep til I cough myself awake again.

Upside? The lack of appetite is extraordinary for me, a gal who just loves my grub. So there will be far less towering over my slightly less iron arse when I hit the bricks again. God only knows when that will be but it will be. I took a 5k walk yesterday after a 12 day break from everything and had to stop and sit down on a park bench about 1-1/2 miles in to catch my breath. Twelve days ago I'd just done twelve miles. The injustice of it all!

Being American I followed the US Olympic marathon trials and read about Shalane Flanagan's surreal brain-fogged podium place. That there is one tough cookie. In this time of political farce, I am proud to be American from that feat alone. That is grit. Drive. Determination. I will recuperate and rescue that same Yankee grit from the depths of my ridiculously angry lungs.

For now, I Lemsip. My hubby is doing the Mr Mom-ing and this too shall pass.

My 'bronze' goal for VLM is to finish. Silver, under 5:30. Gold, near 5:00. I will continue to re-evaluate these but have already done the math - that slow trudging I did yesterday was about a 17:45 mile. The cutoff is beyond that. Even if I saunter, hacking out my guts, I will finish and they will give me a bloody medal.

But no, not me. Me, I will be running over that line. Time wounds all heels and heals all wounds. And lungs. And pride.

Big thoughts to my antibiotics, long may they kick bacterial ass.

I still got this.

Wednesday, 10 February 2016

No, but I have a SON. | #TransatlanticTuesdays

#TransatlanticTuesdays is a collaboration between me (in the UK) and Kera who blogs at The Special Reds (in the US) - sharing our journeys in the form of letters to one another.

Links to play catch up are at the end of this post.

Dear Kera

Last week your reply to my question really hit me in the feels. I particularly liked this part:

"But life is not about perfection. It's about being broken, over and over again, and finding the strength to sweep up those pieces and put them together. And when those pieces are glued together, we might look at ourselves and see those cracks, those visible scars, and think, why can't it just be easier? Ease does not lead to growth, only hard things do."

You're so right. We don't grow when it's easy. We have to bleed and sweat and cry and struggle before we learn anything, about anything. We have to fall before we walk. Stumble before we run. Rain before we flower.

There's been plenty of rain and far too few flowers in the past four years but as you know rain only happens outside - which should pretty much say it all. So to answer to your latest question: "How have you turned the negatives thrown at you regarding your son's diagnosis into positives?" We simply don't live 'negative' with Rukai. Don't feel it, don't allow it, don't tolerate it. We fight it off like teenage acne.

Still those negatives flying around 'out there'...well that's some list. But time is fleeting so I'll keep it simple with a story for you to chew on.

Rukai had a follow up appointment with one doctor early on which was also attended by a woman who sat throughout, observing and making notes - Registrar? Nurse? Hospital Cleaner? Pedicurist? Bus Driver? I have no idea who she was because no one bothered to introduce her to us. In retrospect I wish my mouth had released three simple words: "and you are...?" But retrospect has too many letters and is too far a look back so let's leave it there. We finished that appointment and moved out to the baby change room readying ourselves to go home. 'Random Person X' had been asked to deliver us an insert for Rukai's medical record book which contained growth charts and specific medical guidance for kids with Ds. She points out what's on each page and when she gets to the growth charts I smile and say very nonchalantly that I'll be asking them to plot his growth on the 'typical' chart as well as on the 'Ds' chart.

"No, you have to use the Ds chart," says she.

Slightly startled by the 'no' I force my smile to remain and say "I'll use it, I'm just going to have them use both."

"No, you can't use the other one, you have to use the Ds one."

Again with the no. Are you seriously arguing with me about this?
Now my blood is boiling and T is waiting for the ball to drop.
I look her dead in the eye and ask "do you have a son with Down's syndrome?"
She says "No, but I have a SON."

I heard the enunciation. I saw the reaction. And I couldn't believe this nameless person had the audacity to suggest that I was in no way allowed to make comparison of Rukai with 'normal' children. Oh no, not me. My kid was flawed. Mine was broken.

But she had a son.

She had a son, and according to her, here I must have had a sack of pinto beans. A bottom feeder. A cabbage. How could I have been so foolish in thinking otherwise? It was all I could do to keep from tearing verbal strips off that woman. And I tell you what, Kera, there are memories of things that have lit the fire in my belly and I'm pretty sure that interaction was actually the kindling.

So to answer your question "how have you turned the negatives thrown at you regarding your son's diagnosis into positives?" I take what someone tells me. I question the hell out of it. I believe none of it. And then Rukai proves them all wrong time after time anyway.

The only thing that affects Rukai which anyone has suggested to me (and which I actually believe is fact) is his global delay. Unfortunately, it's always presented as 'problem' when we merely view it as 'challenge'. But more importantly, to heck with us. Rukai is 4 on Saturday and I know very well what he views his global delay as, and you know what that is?


Rukai lives his life at the speed of Rukai and no amount of testing, pressing, comparing, assessing or any such ilk is going to change that. Nor will anything make it a negative. How have I turned the negatives into positives? I take one look at my child who just keeps flinging the negatives out of his way to clear a path and charging on forward. Always moving. Always ahead. There is no way this can be negative.

Momentum is momentum no matter what it is applied to. No matter who is surging ahead from the push and who is riding the wave at the other end.

No time for negatives - even when you have just a little more time than most.

This question made me think of a post on my old blog called 'Samurai Sword' when I really looked at the subject of delay and how I viewed Rukai. The post is nearly three years old to the day and I can tell you I feel exactly the same sat here right now.

Now to hand off I have to add one more small story and that is of my past couple days. We've booked ourselves this fun pre-birthday vacation to celebrate Rukai. Time off work, ready to have some fun, in a woodsy place great for my marathon training, with a swimming paradise fun for all of us. Great meals, fun activities, you name it. Because I've been ill for the past week, and up the last three nights with this relentless cough, the plans included an unexpected doctor visit some hour's drive and 3 and a half hours away from my family this morning. I hadn't planned for that. I was really irritated. Not feeling well, I thought I'd cancel our dinner reservations and then thought, no. Let's get Rukai out and about in the bike trailer, we'll have some dinner, get back to the rental and then switch off.

Kera, we had more fun together than we've had in ages. He walked so much, grinning from ear to ear, enjoyed the ride in the trailer and here as I cannot run with these crazy lungs I managed to get lost for the fifth time and we did a lap of the route back on the bikes before we found the turn off. I'm getting my exercise after all. We had family time after all. The problems threatening to derail our adventures looking so ominous at the start, only a slight speedbump in the road. Just a little delay.

Sound familiar?

So with that I shall leave you with my own question for next week: how do you deal with the unexpected when things go 'wrong' in your world? Either with kids' issues, family issues in general, looking after yourself, etc. When something threatens to derail, how do you get back on track?

Until then, hope you have a fantastic week and look forward to hearing from you.

Love from beautiful Elveden Forest. (Barring the RAF roaring overhead story altogether.)

M  x


New to #TransatlanticTuesdays? Catch up on what you've missed here:

Tuesday, 2 February 2016

Transatlantic Tuesday: Letters from Across the Pond.

If you've read any of my ramblings you will already know I say nothing in brief, so be warned this post definitely wins the word count wars. And by all means go grab a coffee, tea or glass of wine depending on what tickles your fancy (hell, maybe even a Krispy Kreme - life's short, right?) and sit back. You know...if you have time for a long read. If you don't, go on and grab the day by the horns and ride. Lasso. Herd. Wash up. Then come back and spare me twenty, if you would be so kind?

I started blogging just about four years ago largely because it kept life jovial. It kept that life with its constant threat of 'what if' firmly rooted in 'what IS'. Every day with one foot on a skateboard and the other on a banana peel, these words a speedbump. It helped me cope and hasn't yet stopped. Life balm.

How to deal with motherhood when you aren't quite sure you're not crap at it?
Write about it.
What about that unexpected journey for Rukai, and so for our family?
And hey, then there's managing those tricky personal relationships from within this strange new pressure cooker.
Writey write write.

These words are the escaping steam that rattles the lid. They are the finished goulash. The savory gumbo. I spoon them out whenever a new batch is ready and hope that anyone reading really needs a good bowl of home cookin'. I hope they're sopping it up right down to the last with a gargantuan swodge of cornbread. I hope they ask for seconds. Because I don't cook it for myself.

I must tell this story in part because I need it out from my skull, but more so because someone else may be looking for it. Someone careening downhill on that skateboard without a bump in sight. Someone craving home cooking in the middle of a power outage. You are not alone. Have some goulash. While you're here, why not share your recipes - I bet they taste about the same.

The first couple years of Rukai's life were absolutely vicious on me mentally, if I'm being honest. I'm not entirely sure what that reads like in specifics (and expect it will come out via drip feed across many other word stews at some point) but it took a ridicuously long time for me to find any comfort whatsoever in any part of the Down's syndrome community. There was always such a negative slant from every angle to Rukai's very existence from outside that community much to our eternal dismay (we surely never felt it). From those so called authority figures working within 'the system' who were always trying to fix Rukai, when there is not a damn thing to fix. 'Here is where the 'broken' people go, have this leaflet, go to this website. Now I have to deal with other more important things...'

Um, I don't need to tell you where to put that leaflet, thanks. The only thing that's broken is your attitude and belief system. Break this.

So, you understand, I have to tell this story. Because we should have been comfortable embracing that community from the start. Instead we feared it. We feared everything. But time soothes and washes and caresses and the fear is only a memory now. Thank heavens the only time lost is with community, because we have only loved our gorgeous Rukai. He has been a blessing and owner of our hearts all along.

Thank heavens they didn't take that from us. From him.

That long awaited and much needed acceptance led to writing for The Mighty. And it led to me reading other stories, about other disabilities, other life challenges and triumphs, other passionately focused parents seeking the brass ring for their kids, despite all the naysayers telling them they're not capable. Other disabled people speaking proudly of their own journeys - and how they own their journeys.

A virtual gunfight in the virtual OK Corral brought a bunch of these parents together in the SNAP community, of which I'm so proud to be a part. And this group of parent advocates share many of the very same feelings that I have. They 'get' what I need to say. They support me when I'm feeling low and ride waves of joy alongside me. They are me and I am them and we are in a very unique sister- and brotherhood and my doesn't that feel amazing. There aren't words. Ok, there are words but we're on a schedule here...

One of these moms is Kera Maxwell Washburn, who writes a blog I am loving called The Special Reds. Kera's journey is centered around her three very special redheaded kids each on their own unique path. It's no secret that quite probably one of the main reasons we've bonded has a lot to do with 'The Red' bit which has forever been unifying for me, but Kera and I click deeply on that other plane, too. The path is so muddy, but we just go and do our best for our children. Scrape the shoes at the end of the day and do it all again next sunrise. Because.

I tell you what, though, this gal is made of some tough stuff and how she keeps all those plates spinning with a smile on her face and a positive attitude is beyond me. I'm like cartoon geriatric Maxine in comparison. Chalk and cheese. But we have that ridiculously important thread that binds.

At any rate, Kera suggested a couple weeks ago that we share our journeys in the form of letters to one another. Letters! What a fun ride. What a great way to talk about what is so similar in our worlds - hers in the US, mine in the UK - even though we don't have identical paths before us. These lives in parallel mean the parenting role we must take is so similar - those battles to give our kids the best possible lives against societal odds, those emotions, fears, upsets, huge joys - no matter the location, no matter the diagnosis, we are all in this together.

So please enjoy the first step of this new adventure, one which I hope will be popping up here every week. We haven't got the foggiest idea where it will lead (and isn't that the fun of it all?) but I know it will be somewhere familiar and kind and irretrievably honest.

And it will feel like home.


Tuesday, 2 February, 2016. Icebreaker.

Dear Kera,

I'm so envious of you right now.

I just got through your story about your neighbor digging up the courage to turn up at your door and raise her suspicions about your beautiful copper headed firstborn, Juliana, having autism. I appreciate that your words about the moment are only partial, concise and to the point, because that's what we do as storytellers, we get down to it. We think it out and wield the delete button like a scythe across a field of wheat, we chop and edit and condense to the point.

But the point is like an iceberg - the frozen depths are where the real story lives. And I can't help but wonder what is buried beneath the ice.

There is so much left unsaid in the tales we share of our journeys as parents of kids with special needs, disabilities if you will (but I won't. I hate the prefix 'dis' because it presumes lack of ability. Let's accentuate the positive for now as the song says.)

Shame I couldn't have got down to doing that four years ago. But by all that I am, I really do feel green towards you in that you had that time of not knowing. You had that time of raising that beautiful girl unknowing, in a world which views different as problematic - and when all is said and done, the actual problem is that this 'problematic' viewpoint exists at all.

Our journey didn't include any of that. In some ways I feel lucky because I don't think I have your strength and belief and generosity of heart to welcome someone from outside the inner circle telling me something I may not want to hear. I have shunned every outside opinion from day dot, mostly because they have, from day dot, in their own little ways, kept telling me my son isn't worthy of existing at all.

I have started off on the back foot. But I've since learned that if you lean deeply enough into that back foot you get more momentum to launch yourself into tomorrow.

Our negative experience began from the first office visit in pregnancy and worsened with each subsequent appointment. We never had the chance to birth a 'healthy baby' a 'typical child', any other descriptor of an infant without a condition science immediately labels 'problem'. And when our gorgeous Rukai was born the only joy was hushed by sharp looks and whispers, of words like 'risk' and 'upslanting palpebral fissures' and 'floppy' and 'T21?' scrawled across that blasted red book of maternity notes they make you lug around in the UK. I felt as if they wished difficulty upon us. As if they willed Down syndrome upon him. That he'd wear it like a yoke, digging that plow of misinformation behind him through life, raising the soil that continued to plant the seeds of doubt given him by the very same doctors who'd sworn an oath to protect, serve, care for him. Those early doctors never did care for him, not really. One even brushed us off with 'did you have any other questions? I have a very sick child to look after down the hall.'

Sorry to take your time, Doctor. I hope Rukai feeds those words right back to you one day.

There came the day his diagnosis was confirmed by that same heartless practitioner. After the blood test we had demanded because their 'soft signs' were nowhere near good enough. You don't give me guesswork when you're telling me our firstborn and only child has a condition for which society will endlessly throw him away and marginalize him. You give me proof. And so they did. But still that proof burned. Branded.

And I went for my first post cesarean shower in the private room they'd put us in - in retrospect now I know why - to that room in which I took off those bandages and collapsed into a ball in the corner and let the water wash all of that hurt and worry and stress down the drain. And I wailed myself hoarse.

But I didn't cry for the diagnosis. I cried out of fear that my son, my gorgeous boy, my sweet beautiful Rukai, would suffer the same relentless bullying that I endured throughout my childhood. And for no reason other than he happened to be born with an extra chromosome. I cried in fear and in anger that life had dealt him a shitty hand in that there are people out there who would hurt him without even thinking about it. That there would be those who thought less of him than of any other human being, he, one who bleeds red, because we ALL bleed red. It doesn't matter how many chromosomes are in that blood, it's always red.

I envy you Kera, that your journey on those early days was not yet visible. I so wish our little family could have had some minute spot of joy on those early days because it was entirely stolen from us by so much fear, and from every angle.

But wait.

This is four years later.

And like every type of grief, no matter what it is for which we are grieving, it fades, it has left its scars but we no longer let it own us. And we see the thing we are grieving for what it is.

Rukai is four in a couple of weeks.
Rukai is in preschool and has loads of friends.
Rukai is developmentally delayed but is doing what he should be doing for the stage of development which he is in. And he is doing it with style.

Rukai is outright amazing. Had I known it then, I'd have hoiked myself up from the floor and said pull it the hell together, girl.

You see, no one had told us Rukai's reality would be possible. Certainly not the doctors. Certainly not society. And to our great misfortune, no amazingly thoughtful neighbors could have predicted the reality of our lives today. We have clawed our way out of that chasm of 'what if' to reach these heights of 'what IS'.

And the view from here is mind blowing.

Now I look back on those very early days with curiosity. Little if no regret. Because the ferocity and intensity of my reaction to the path we had been set on has only underpinned the ferocity of my approach to everything that Rukai needs in this life. I am his mother, his protector, his advocate and later in life - if I'm lucky - his confidante. I am his tiger mom. I am...HIS. I do little that doesn't place him first. Because he is so ridiculously worth it.

I love that every day I see how far he has come and his engagement with me says 'cool out, ma, it's ok. I got this.'

Four years ago I was so unbelievably worried. Today, not so much. Today the level of pride and anticipation and hope and expectation eclipses any worry I once felt. There is a shield between us and the outside world which allows in what Rukai needs and prevents all the unnecessaries from finding their footing. This shield has been lain by Rukai himself, because it is he who is in charge, and no one else. Despite what any of the outsiders who keep trying to get a look in may think, Rukai is in charge.

Little did I know on that cold February day, in that amazing Olympic year 2012, that I really had, in fact, given birth to a champion.

Now if you're up for it, how about telling me what exactly is buried in that ice?

Love & best wishes from over the pond.

Maxine x