Here's me in that blissfully silent house again. On an informal 'respite day' thanks to grandmother on the other side of town wanting to hang out and overnight with our intrepid hero, her beloved Rukai. I waved him off in Daddy's car, and came in to find the guffawing Mr Tumble gone silent once again. Man, I love that show almost as much as he does but it sure is nice to hear nothing sometimes.
The silence is both a calm before and after the storm. Two different storms to be exact.
Today's plans involve folding and putting away some six weeks' worth of laundry which has been sitting in baskets on my desk, thus making my home office continue to be a dream. Reorganizing closet space from our move in a year and a half ago so we can actually have some room to breathe. Filling out remortgage paperwork and trying to get the bills paid. Sorting through the pile of letters and appointments and organizing what we have to do when the rollercoaster goes up that hill again in January. Plotting out my fundraising event concurrent with the London Marathon, looming in April. My to do list has a to do list. I will jam this into a day and a half because that is what time I have.
My house is a tip.
My son is extremely content.
A delicate balance, but in the tug of war, 'content' always trumps 'clean'.
My time so completely taken by ensuring Rukai's needs are met, that he is having fun, that his fun is helping him learn and progress, that I am laying the foundation for him to have a successful life and lo and behold make it in this life when my husband and I are gone. When this child without siblings is left on his own.
Everything I do, every moment of my life, every word I write, is for my son. And apparently this makes me a 'martyr mom'.
You see, there has been a shitstorm in a place I once thought was an oasis - an online community called Mighty Voices, consisting of folks who've written for The Mighty. This was a community of people all on the same page, talking about disability, advocating for themselves or for their children; some for both. We were all trying to help the world understand that disability is inherently only difference and a clear path in life should be available to everyone.
Unfortunately just the same as Democrats and Republicans will go to battle over gun control and freedom of choice, there arose a battle between disabled self advocates and parents who write about their children's disabilities because of a post which contained black humor that backfired gargantuanly. Parents who write about their disabled kids were tagged martyrs who only write to wallow in self pity about what a burden their kids are. There came a faction of warring self advocates banging the table and demanding that we only write in a certain way, shouting about all that we may not say when it comes to our own lives.
There's battle lines being drawn.
Nobody's right if everybody's wrong.*
Afraid it IS my own life, dears. Scamper back on up to the top of this post and see how entwined our lives are with our kids. How every breath I take is with the purpose to help my toddler become a teen who becomes an adult who not only contributes to society but speaks to society for and on behalf of himself.
Today he is nonverbal. Today I am his voice. Deal with it.
I am his voice because barring a sweet precious few, no one we have met to date bloody listens to his own voice. No doctor looks at Rukai and says 'good morning young man, show me what you have achieved lately?' No, no they just sit behind a clipboard and spout about 'they' and statistics and all other means of medical bullshit that takes away Rukai and sees nothing more than Down's syndrome. I am as fucked off about that as any self advocate is when they are left unheard. I get that. I really do.
But this is OUR journey. We walk it together.
And today I am his voice.
This does not mean I am trying to quash his voice (and how dare you suggest it)?
This does not mean I do not listen to his voice (and how dare you suggest it)?
I am doing everything in my very power to draw out his own voice. Yet this teaching of language and understanding and comprehension takes a far cry longer when you have a kid with a learning disability. He is going on four and has no true spoken words. This doesn't really trouble me until I sit before a pediatrician undertaking yet another box ticking exercise who then decides to label him with a 'developmental age' which corresponds to the slow language build up. What purpose does 'your four year old is actually like a one year old' serve but to knock the wind out of our sails? And I can't write about that lack of language being troubling without being labeled a martyr? I can't write about bawling my fucking eyes out in sheer frustration because yet another doctor has thrown my son away again? This makes me a martyr? Because I write about not letting anyone understimate my son?
How dare you.
I WILL write. And write. And write. I don't write for those who don't 'get' our journey. I write for those ON it. I wouldn't steal your voice, so go on and back the hell off of mine.
And today I am HIS voice.
Some days I get so saddened by the slow pace because I can see the brilliance behind his eyes. I can see the immense frustration when he fails to get something right. And he goes back and goes back and goes back until he succeeds. My pride is boundless. So today I am his voice. So that doctor, that therapist, that education coordinator can all hear him. There are checklists everywhere which deny him his progress and every word I put on paper punctures a hole through the lot. It turns them to ash.
So today I am his voice. Do not try to silence me, because by doing that today, you are actually trying to silence him.
There is a blatant home truth to the root cause of the uproar. Although black humor gets many parents - all parents, not just those with disabled kids - through many a dark moment, there are times when that same humor can fuel the fire of stereotype and harm the goal of inclusion for everyone if shared publicly. Apologies are made, and people move on, right?
If only.
The other fire that gets fueled in the shitstorm is the one where people choose sides and start every sentence with "you don't understand me because..."
You're right. I don't understand you and you don't understand me. And never the two shall meet if we censor one another. Live and let live. We actually are on the same side, despite what you may think. And I'm awfully sorry that you are so pissed off about it, that you have such a level of discontent it lifts you to bash me and call me a martyr.
To date I have written volumes about my son and I can safely say every word has educated my circle of friends to the reality of our lives together, and slowly chips away at those damaging stereotypes. This is the goal. All life has the good, the bad and the ugly. All life deserves to be recorded. All voices deserve to be heard.
One day as soon as is humanly possible you will hear Rukai's. But until then, I am his voice.
*Buffalo Springfield - For What It's Worth
Tuesday 29 December 2015
Thursday 17 December 2015
Half speed ahead.
#RunningForRukai
Nearly one month to the day since my heel screamed 'Oy! OFF me you silly cow!' I am beyond happy to report that I am BACK.
I'm pretty sure the acute injury I sustained last month and now seem to have got rid of had to do with the heel collar of my shoes bashing away at a sensitive spot at the base of my peroneal tendon and it flared up. In other words, my shoe beat the everloving crap out of my foot. I know there are weaknesses elsewhere and have identified a sore spot midway up the tendon that I've been foam rolling into oblivion, which combined with rest has put me back on two very short and tentative treadmill sessions this week - fist pumping the air after I surpassed my 20 minute goal today, uninjured. Oh the grin. I think I may have creeped a few people out *a little*.
I ran in my swizzy Chrimbo compression socks and a spanking new pair of my favorite Asics Nimbus which not only support my feet but pretty much caress them, take them on a date and drive them home in a Ferrari. I think I'm officially divorcing my Hokas. I'll even give back the ring. Take THAT you heel basher. Away with you. Go.
Throughout it all, I've been maintaining Operation Iron Arse so all square there. In fact, it occurs to me that all my previous problems have been in hips and core area and this has come on after all that strength work. So stands to reason I now have increased strength significantly amongst the 'usual suspects' that the pain has moved elsewhere, settled in and started frying up some bacon like a pack of squatters. Really? Ok. Ok. So what now?
There's so much science involved in this running lark I feel like I should get an honorary degree. Can't just go run. There are equations and formulae. I feel like I'm living in a petri dish. I am total and utter shite at science but cannot believe how much I am learning through all this about every square inch of my musculature. It's really pretty interesting. I knew a lot from many years as a dancer, but this aging body is throwing out a fair few more shapes than the young one did. Ok, you wanna dance? Let's dance you and I.
Since my original training plan has gone straight to hell in a handbasket I'm now on to plan B...if soreness stays at bay, the weekend will find me out for a thirty minute third 'test run' and a sports therapist visit. Then if all goes to plan I'll get back into my typical midweek 5ks next week and maybe a festive Parkrun on Boxing Day. I'm hoping to get the weekend 'long' run back to my comfortable 10k+ before January and then pretty sure I can swing a mile a week increase in long run up to April. So plan B it is. That is what happens in races, right? This is the mental practice. I know from my halves - especially the last tortuous one - that it's the mental stuff which gets you over the line. The body just does what it's told.
So firmly accentuating the positive, I'm revving up the engines. Here we go again!
Monday 30 November 2015
So I know that you’re still with me.
In this season of love and hope that there really is some type of Everafter, I have at long last put this story to paper. A story which has sat in my heart for over 2 years. This story is about the day my father left us, which is also the day he gave me the greatest gift of my life.
Merry Christmas.
Believe.
___________________________________________
“Dad, there’s something I really need to ask you.”
I didn’t know it then, but there would only be ten days left to ask him anything.
We were sitting in the living room of my father’s apartment—now his home-hospice, the place where he had chosen to succumb to the cancer that had moved in and was evicting him from his own body. Stubborn to the bitter end, in-patient care was out of the question. To die in comfort was the only thing left which my father could control, so we all did what we could to accommodate him. There in the midst of such total helplessness, smothered by a situation about which we could do nothing, this also delivered the tiniest bit of comfort to us.
I’d arrived mere hours earlier from my home in England to deliver my goodbye. The seemingly outrageous decision to visit Chicago in the dead of winter was made more urgent by the recent news that Dad’s condition had deteriorated significantly since my son’s first birthday two weeks before. Although he was still very much his typical jovial yet cantankerous self from the minute I saw him, this newfound ease with difficult questions not only alarmed me but also gave me comfort that he was at last finding peace with the inevitable. The conversation between us was strangely easy. Unfettered with nerves and pretense, there were few what do I do’s, but only a pressing need to find closure for us both and to set him on his way the right way.
No regrets. So I let loose.
“What are you going to send me when you’re gone so I know that you’re still with me?”
The words to that purely selfish question shoved the lump in my throat clean out of the way in their desperate need for release. I have always believed in guardian angels and I hoped more than I’d hoped for anything in my life that my father would become mine. That he’d watch over my son.
And sure enough, Dad tried to provide me an answer. He looked up at the ceiling as if he’d find it written there and leaned back in his tatty recliner with a wry smile.
“Well, I’d tell you that I love you very much. And I’m thankful for everything you’ve done…” he trailed off, lost again in the place between now and forever, that place I’d seen him slip into earlier in the conversation.
I resigned myself to thinking that maybe I wasn’t supposed to have an answer after all. That an answer would put me closer to the angels than I was worthy. And that was ok.
I glanced up at the tall curio cabinet behind him and caught sight of a baseball hat with a clover on the front; the same hat he’d been wearing the last time we’d seen him, the last time he would ever see his only grandson.
Dad stayed temporarily adrift so I reluctantly let my question slide and found another. “Can I have that hat up there for Rukai? You were wearing it in a few pictures I have of you and him and I think he’d love to have it when he gets older.”
Dad turned gingerly to see what I was looking at. Every fiber of him screamed out in pain but he turned. Because I’d asked him to, he turned. He smiled. “Sure, take anything you want.” He was giving his things to me without hesitation. You read about this. This couldn’t be happening. My heart was in splinters and begged me to break down. I smiled instead. “Thanks Pops.”
I took the hat down and made my way down the short corridor leading to his bedroom to add it to the small stack of things he’d already given me to take home. As I turned and stepped into the room, I heard him say “yeah, I’ll send you something.” I stopped in my tracks, looked at the hat in my hand and smiled. “Maybe a clover.” I laughed thinly as I lay the hat on the bed and turned to go back out.
I glanced at the desk to my left, where a framed photograph lay face down. With other more pressing things at hand, I let it lie and went back to savor more of the time we had left. For the day, this would only be another 15 minutes as the disease also brought with it exhaustion–it was time for a nap. I settled for another treasured hug and promised to call him later.
So as Dad napped, I left and went about my business. That business of visiting funeral homes and cemeteries. Of discussing life insurance and shopping for things that would bring him comfort. Plastic cups he could grip with weakened hands. Suspenders to hold up his pants which had become at least three sizes too big from the weight loss. Slippers he could squeeze over his feet swollen with retained fluid.
Then, a chain for the mini rosary given him by a favorite uncle. “Did you want the extended warranty on this?” asked the sales lady. No. No need. This would be going with him.
I got back to my hotel and carefully tucked that clover hat into my carry on. I dare not leave it behind or risk it get lost in a checked bag. It’d be amongst the ‘all I have left’. I slept.
Fitfully, I slept.
___
Departure day began with my phone bleating over a late night shower. I picked up a message telling me Dad had slid out of his recliner in the night and his carer wasn’t able to help him back up. They’d called the paramedics who took some 25 minutes to arrive, but they managed to get him settled in for the night. His carer rang later to tell me Dad’s breathing was labored. I slept with one eye open the rest of the night, but again I slept.
I awoke to the eleventh grey Chicago morning of the journey. This day was the conclusion and the reason I came. It was that last goodbye, which had played out in countless words and hugs and stories and gratitude over a strangely long series of days.
But the days had gone and Dad was following close behind.
I arrived to find him wincing, delivering a last hug which could only be returned with a cheek pressed against my own. “You look like you’re in pain today, Dad. What’s hurting?”
“My neck is killing me.”
“Where?”
He drifted a hand behind his head, moving it left, now right, now left.
“At the base of your skull?”
Thumbs up. No words.
“Can I get you something?”
A croak, sounding like ‘coffee’. I repeat it. He nods.
He would have a sip. He would not speak nor drink again.
Then he would drift.
___
There had been a stack of bills on the end table all week. We had meant to go through them all—the ‘life admin’ was another duty I was trying to uphold for him. I hadn’t finished. There they sat. I’d promised to sort it out by phone with his carer after I got home.
For now, there they sat.
Dad’s carer knew this was the last I’d ever have of my father alive. So he graciously left us to the quiet, barring the TV and its Saturday afternoon Son of Svengoolie presents Dracula–quite possibly Dad’s favorite movie. There was nothing but us and that clock just ticking towards two departure times. One from the airport and the other from the very air.
Another friend who I’d asked to be there for Dad once I left had come and gone to get some lunch. Then again, still more silence.
Dad had been drifting in and out of consciousness all day. There was at once a heavy stillness yet such a tremendous lightness in the room. Where I should have been feeling torment, there was only the slightest concern that for the first time since I’d arrived I didn’t know what I should be doing. I thumbed through the leaflet hospice had given us and counted how many signs of pending death I was witnessing. I did this very matter of factly, with a serenity I rarely possess. I am sure I didn’t find this from within myself, but from the place and the time and the happening.
Each time I got up to use the bathroom or refill my glass of iced tea, I saw Dad peek out of the corner of his eye, disturbed by the sudden activity. I’d come back to find him still again. I felt like an intruder who’s surprisingly asked in for dinner.
His drift made him restless, and I began to see such such beauty in the drift as I searched for its meaning. Dad would sit forward in the recliner and stroke the armrest with his left hand, then lean back and the hand would move to rub his forehead. On and on this repeated, and every repetition made me wonder what I was missing. Am I preventing him from going? What should I say? What must I do?
I turned the volume down on the TV. I told him how much I loved him and how grateful I was that he waited for me to come and see him one last time. I told him it was ok to go. I told him I’d be ok. That everything would be ok.
Still he drifted.
The door opened and Dad’s carer returned. We had a bit of conversation about how Dad had been and he realized that we hadn’t finished the bills. I was relieved that we had a task. I was due to leave in about 90 minutes. It was beginning to hurt.
We started through the bills, making a few phone calls, asking for payment addresses. Dad’s restlessness had stopped and his breathing was slowing. It seemed we were all reaching an end.
“There, that’s done,” I said, and the bills went into a neat pile on the table. A small accomplishment, small talk, and I needed to have one more conversation.
“Can I talk to you for a minute?” I asked Dad’s carer. We stood up and went into Dad’s bedroom, out of earshot. I told him not to worry when Dad did leave us, that I was sure it would happen on his watch and I didn’t want him to feel ‘at fault’ or as if he was unable to prevent it. We hugged. We knew it was coming.
We finished our conversation and just before we walked back into the living room, I stopped and turned over that photo frame I’d seen sitting on the desk. It was a picture of Dad and his sister, both smiling, long ago. “I think you’ll be seeing each other very soon,” I said.
As I turned to walk out, I sensed Dad’s carer behind me and to my right. We both made our way down the hall and stopped in front of Dad, folded our arms and mirrored each other in our shoulder to shoulder stance. We looked down. I was watching to see Dad’s chest rise and fall but I only saw stillness. I’d read that breathing slows almost to a stop at the very end of a life. I thought he was in a lull. I thought I’d have to come back to see the rise again.
I turned to my left and made my way into the kitchen for another refill. Then I came back and knelt down next to Dad’s chair to watch for movement. Like waiting to see the grass grow, there was nothing discernible. I put my hand on his chest. Nothing.
"Dad? Are you still with us Dad?"
The front door opened and Dad’s friend had come back. My hand had reached to check for a pulse and again found nothing.
“I think he’s gone.” This voice cracking, desperate. Not mine.
Dad’s friend tried to rouse him. He shouted Dad’s name, felt for breathing, felt for pulse. Still nothing. Dad’s carer had come out of the bathroom and stood over us, silent.
There we all stood and there Dad had gone. It seemed I wouldn’t be on that flight after all.
It was Dad who’d said goodbye.
___
In the haze of the next few days, where all meticulous plans came at last to fruition, I found little time to reflect with the people who’d been there with me that afternoon. I wanted to talk to Dad’s carer about that moment, where we stood together and bid my father goodbye. I’d felt Dad was still with us then. I wanted him back if only within a memory. Within a shared experience.
It wasn’t until I finally got back to England a few days after the funeral, after I’d said goodbye to Dad’s grave, when I was able to phone Dad’s apartment to talk with his carer, who was looking after packing up his things and moving everything out. I asked him about how we walked out of Dad’s room together and stood in silence. I commented how strange I found it that we’d stood in reflective poses and had that quiet moment so similarly.
He didn’t have a clue what I was talking about.
“When we walked out of Dad’s room and stood in front of him? And then I turned to go into the kitchen and you were still in the living room?”
“I didn’t walk out of the room with you,” he said.
I froze. My heart leapt.
“I went from your Dad’s room into the bathroom. And you walked out of your Dad’s room and turned right.”
But there WAS someone beside me. Someone who led me out of that room, across that very same threshold where my Dad had told me days earlier that he’d send me something to let me know he was still with me.
And he had. He sure had.
Merry Christmas.
Believe.
___________________________________________
“Dad, there’s something I really need to ask you.”
I didn’t know it then, but there would only be ten days left to ask him anything.
We were sitting in the living room of my father’s apartment—now his home-hospice, the place where he had chosen to succumb to the cancer that had moved in and was evicting him from his own body. Stubborn to the bitter end, in-patient care was out of the question. To die in comfort was the only thing left which my father could control, so we all did what we could to accommodate him. There in the midst of such total helplessness, smothered by a situation about which we could do nothing, this also delivered the tiniest bit of comfort to us.
I’d arrived mere hours earlier from my home in England to deliver my goodbye. The seemingly outrageous decision to visit Chicago in the dead of winter was made more urgent by the recent news that Dad’s condition had deteriorated significantly since my son’s first birthday two weeks before. Although he was still very much his typical jovial yet cantankerous self from the minute I saw him, this newfound ease with difficult questions not only alarmed me but also gave me comfort that he was at last finding peace with the inevitable. The conversation between us was strangely easy. Unfettered with nerves and pretense, there were few what do I do’s, but only a pressing need to find closure for us both and to set him on his way the right way.
No regrets. So I let loose.
“What are you going to send me when you’re gone so I know that you’re still with me?”
The words to that purely selfish question shoved the lump in my throat clean out of the way in their desperate need for release. I have always believed in guardian angels and I hoped more than I’d hoped for anything in my life that my father would become mine. That he’d watch over my son.
And sure enough, Dad tried to provide me an answer. He looked up at the ceiling as if he’d find it written there and leaned back in his tatty recliner with a wry smile.
“Well, I’d tell you that I love you very much. And I’m thankful for everything you’ve done…” he trailed off, lost again in the place between now and forever, that place I’d seen him slip into earlier in the conversation.
I resigned myself to thinking that maybe I wasn’t supposed to have an answer after all. That an answer would put me closer to the angels than I was worthy. And that was ok.
I glanced up at the tall curio cabinet behind him and caught sight of a baseball hat with a clover on the front; the same hat he’d been wearing the last time we’d seen him, the last time he would ever see his only grandson.
Dad stayed temporarily adrift so I reluctantly let my question slide and found another. “Can I have that hat up there for Rukai? You were wearing it in a few pictures I have of you and him and I think he’d love to have it when he gets older.”
Dad turned gingerly to see what I was looking at. Every fiber of him screamed out in pain but he turned. Because I’d asked him to, he turned. He smiled. “Sure, take anything you want.” He was giving his things to me without hesitation. You read about this. This couldn’t be happening. My heart was in splinters and begged me to break down. I smiled instead. “Thanks Pops.”
I took the hat down and made my way down the short corridor leading to his bedroom to add it to the small stack of things he’d already given me to take home. As I turned and stepped into the room, I heard him say “yeah, I’ll send you something.” I stopped in my tracks, looked at the hat in my hand and smiled. “Maybe a clover.” I laughed thinly as I lay the hat on the bed and turned to go back out.
I glanced at the desk to my left, where a framed photograph lay face down. With other more pressing things at hand, I let it lie and went back to savor more of the time we had left. For the day, this would only be another 15 minutes as the disease also brought with it exhaustion–it was time for a nap. I settled for another treasured hug and promised to call him later.
So as Dad napped, I left and went about my business. That business of visiting funeral homes and cemeteries. Of discussing life insurance and shopping for things that would bring him comfort. Plastic cups he could grip with weakened hands. Suspenders to hold up his pants which had become at least three sizes too big from the weight loss. Slippers he could squeeze over his feet swollen with retained fluid.
Then, a chain for the mini rosary given him by a favorite uncle. “Did you want the extended warranty on this?” asked the sales lady. No. No need. This would be going with him.
I got back to my hotel and carefully tucked that clover hat into my carry on. I dare not leave it behind or risk it get lost in a checked bag. It’d be amongst the ‘all I have left’. I slept.
Fitfully, I slept.
___
Departure day began with my phone bleating over a late night shower. I picked up a message telling me Dad had slid out of his recliner in the night and his carer wasn’t able to help him back up. They’d called the paramedics who took some 25 minutes to arrive, but they managed to get him settled in for the night. His carer rang later to tell me Dad’s breathing was labored. I slept with one eye open the rest of the night, but again I slept.
I awoke to the eleventh grey Chicago morning of the journey. This day was the conclusion and the reason I came. It was that last goodbye, which had played out in countless words and hugs and stories and gratitude over a strangely long series of days.
But the days had gone and Dad was following close behind.
I arrived to find him wincing, delivering a last hug which could only be returned with a cheek pressed against my own. “You look like you’re in pain today, Dad. What’s hurting?”
“My neck is killing me.”
“Where?”
He drifted a hand behind his head, moving it left, now right, now left.
“At the base of your skull?”
Thumbs up. No words.
“Can I get you something?”
A croak, sounding like ‘coffee’. I repeat it. He nods.
He would have a sip. He would not speak nor drink again.
Then he would drift.
___
There had been a stack of bills on the end table all week. We had meant to go through them all—the ‘life admin’ was another duty I was trying to uphold for him. I hadn’t finished. There they sat. I’d promised to sort it out by phone with his carer after I got home.
For now, there they sat.
Dad’s carer knew this was the last I’d ever have of my father alive. So he graciously left us to the quiet, barring the TV and its Saturday afternoon Son of Svengoolie presents Dracula–quite possibly Dad’s favorite movie. There was nothing but us and that clock just ticking towards two departure times. One from the airport and the other from the very air.
Another friend who I’d asked to be there for Dad once I left had come and gone to get some lunch. Then again, still more silence.
Dad had been drifting in and out of consciousness all day. There was at once a heavy stillness yet such a tremendous lightness in the room. Where I should have been feeling torment, there was only the slightest concern that for the first time since I’d arrived I didn’t know what I should be doing. I thumbed through the leaflet hospice had given us and counted how many signs of pending death I was witnessing. I did this very matter of factly, with a serenity I rarely possess. I am sure I didn’t find this from within myself, but from the place and the time and the happening.
Each time I got up to use the bathroom or refill my glass of iced tea, I saw Dad peek out of the corner of his eye, disturbed by the sudden activity. I’d come back to find him still again. I felt like an intruder who’s surprisingly asked in for dinner.
His drift made him restless, and I began to see such such beauty in the drift as I searched for its meaning. Dad would sit forward in the recliner and stroke the armrest with his left hand, then lean back and the hand would move to rub his forehead. On and on this repeated, and every repetition made me wonder what I was missing. Am I preventing him from going? What should I say? What must I do?
I turned the volume down on the TV. I told him how much I loved him and how grateful I was that he waited for me to come and see him one last time. I told him it was ok to go. I told him I’d be ok. That everything would be ok.
Still he drifted.
The door opened and Dad’s carer returned. We had a bit of conversation about how Dad had been and he realized that we hadn’t finished the bills. I was relieved that we had a task. I was due to leave in about 90 minutes. It was beginning to hurt.
We started through the bills, making a few phone calls, asking for payment addresses. Dad’s restlessness had stopped and his breathing was slowing. It seemed we were all reaching an end.
“There, that’s done,” I said, and the bills went into a neat pile on the table. A small accomplishment, small talk, and I needed to have one more conversation.
“Can I talk to you for a minute?” I asked Dad’s carer. We stood up and went into Dad’s bedroom, out of earshot. I told him not to worry when Dad did leave us, that I was sure it would happen on his watch and I didn’t want him to feel ‘at fault’ or as if he was unable to prevent it. We hugged. We knew it was coming.
We finished our conversation and just before we walked back into the living room, I stopped and turned over that photo frame I’d seen sitting on the desk. It was a picture of Dad and his sister, both smiling, long ago. “I think you’ll be seeing each other very soon,” I said.
As I turned to walk out, I sensed Dad’s carer behind me and to my right. We both made our way down the hall and stopped in front of Dad, folded our arms and mirrored each other in our shoulder to shoulder stance. We looked down. I was watching to see Dad’s chest rise and fall but I only saw stillness. I’d read that breathing slows almost to a stop at the very end of a life. I thought he was in a lull. I thought I’d have to come back to see the rise again.
I turned to my left and made my way into the kitchen for another refill. Then I came back and knelt down next to Dad’s chair to watch for movement. Like waiting to see the grass grow, there was nothing discernible. I put my hand on his chest. Nothing.
"Dad? Are you still with us Dad?"
The front door opened and Dad’s friend had come back. My hand had reached to check for a pulse and again found nothing.
“I think he’s gone.” This voice cracking, desperate. Not mine.
Dad’s friend tried to rouse him. He shouted Dad’s name, felt for breathing, felt for pulse. Still nothing. Dad’s carer had come out of the bathroom and stood over us, silent.
There we all stood and there Dad had gone. It seemed I wouldn’t be on that flight after all.
It was Dad who’d said goodbye.
___
In the haze of the next few days, where all meticulous plans came at last to fruition, I found little time to reflect with the people who’d been there with me that afternoon. I wanted to talk to Dad’s carer about that moment, where we stood together and bid my father goodbye. I’d felt Dad was still with us then. I wanted him back if only within a memory. Within a shared experience.
It wasn’t until I finally got back to England a few days after the funeral, after I’d said goodbye to Dad’s grave, when I was able to phone Dad’s apartment to talk with his carer, who was looking after packing up his things and moving everything out. I asked him about how we walked out of Dad’s room together and stood in silence. I commented how strange I found it that we’d stood in reflective poses and had that quiet moment so similarly.
He didn’t have a clue what I was talking about.
“When we walked out of Dad’s room and stood in front of him? And then I turned to go into the kitchen and you were still in the living room?”
“I didn’t walk out of the room with you,” he said.
I froze. My heart leapt.
“I went from your Dad’s room into the bathroom. And you walked out of your Dad’s room and turned right.”
But there WAS someone beside me. Someone who led me out of that room, across that very same threshold where my Dad had told me days earlier that he’d send me something to let me know he was still with me.
And he had. He sure had.
Saturday 28 November 2015
The things I do for bubs.
#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2
So knowing the goal and knowing the method towards the madness, I set out for a ride yesterday. Now, trainers are on the no list, because their hard heels and my sore one are at odds. So out come the fake uggs (fuggs to you and me) over the typical running kit. And here, wait - it's cold and it's coming up on Christmas. So out too comes the novelty headgear, and Rudolph the Redheaded Rider was born.
Seeing as how I already have too many nicknames to fit on my race vest, I may have to sew on a train, scribble them all on and hope like hell I don't end up carting a bunch of skitchers down the Embankment by the end of the race. That said, I'd have to actually be in FRONT of people for this scenario to happen. Dare to dream! Accentuate the positive!
I'm positively champing at the bit to run, and although cycling felt a bit like 'having to settle', the course I took yesterday was a great out and back, with three laps of the local park in the middle for a nice 10k ride. To my great delight it burnt up my teardrop muscles which have seemingly zero strength if yesterday was anything to go by. I think maybe they are the culprit for some of my imbalance issues, considering they oppose bits that hurt a lot.
(That there is novice runner science. Do I get a prize or something? Even a pint would suffice...beer is carbs, right?)
End of that mad cycling jolly I felt cardiovascularly sound, entirely used up and really optimistic that my cross training option will keep me ticking away til I can meet foot to pavement again. I will be good and listen to my physio and get that heel sorted. I will wear my fuggs everywhere til I can wear trainers again. I will clamshellclamshellclamshell. IwillnotrunIwillnotrunIwillnotrun.
Until I can RUN, that is. Then you just try and stop me.
Wednesday 25 November 2015
My heel's on the bus.
#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2Kind of like Christmas dinner with siblings, just when you think everything is going well, the shit hits the fan. Enter my poor overworked little heel. In the midst of a blissful 5k before work the other day there is a sharp pain like something hit a nerve in the back of my heel. I pause, pull the padded bit of my sock up higher and keep going. Drama averted. Finish the run, not too much worry, all is fair. Pace is fantastic. I feel like a superhero.
Couple days later I get out on a blissfully cool afternoon to try out the perfect local 5k. I'm wearing the same shoes (my Hokas, not my Asics) going at a great clip, need little walking, feeling strong and bazoinga, there is that old sharpie again. Try the same solution which works again til the sock falls back in, so there I go thinking there's too much 'stuff' between my heel and my shoe and it's causing me a friction issue. The heel of the Hoka rides up higher on my foot than my Asics and is nowhere near as cushioned. I've had similar across the top of my foot when my laces were too tight - couple days off and I'm back in action. So I hope once again.
Having pondered all this as I make it round and head home, favoring the dodgy foot but not *quite* limping, and google...
Oh my great good lord. Please don't be a hairline fracture. Please don't be insertional achilles tendonitis, which even hurts to pronounce. Next day I had a physio appointment and we are now looking (hoping) at the cause of bursitis as it only hurts when pressure is applied. (Funny that...just like life!) No pain on heel raises, no pain on stairs, no pain until I try to wear shoes and move at the same time.
Oh. Shit. It's winter. Timing is not my strong suit. You may not need toenails to run but you need TOES.
Fortunately Ugg boots (ok, ok, I'm too cheap for the real ones..."Ugg-type boots") are still in fashion and they press on nothing so on they popped today.
Such drama for such a tiny sac of fluid in the back of your foot. Will someone please email my body and tell it to behave? I have a marathon to train for. I have a huge Thanksgiving dinner to burn off at the end of the week so guess I'll have to break out the cycle and get a few laps of the park in. Can you cycle in Uggs?
I also have a lot of clamshells and side stepping to do. Can always strength train when your heel's on the bus, right? All day long.
Now where's mini coach...
Monday 23 November 2015
I reminisce.
I'm going through old photos and near suffocating on melancholy. The one that reminds me that everything is temporary. The things we think are finite and permanently affixed to our reality, they fade, they crack, they're sold off or discarded. They are somebody we used to know. We move on.
Sat in this house, that of the silverfish and slurping dehumidifier, that of the smaller lounge and larger bedrooms, of the drive and garage, of the clutter bloody EVERYWHERE and no time in this life to even dust it off.
I reminisce.
The past is firmly set there behind us, with all its sepia tinged sorrows and lost loved ones. All its missing friends and broken relationships and extracted toxicity. Tomorrow remains as unknown as today was to yesterday. We are on that journey, that ticket clasped in hand, the conductor shouting all aboard, let's ride. The destination board turning as we pass, hurried to get rolling, we know nothing of where we are headed but only that we go. We go into mist. We go because we must.
I reminisce.
Thanksgiving is as important to me now as it was to me as a kid, 14 years later in a country different than the one in which I was born. They don't celebrate it here. They don't but I will always. I celebrate. I give thanks.
I reminisce.
Then.
When we met as Family.
Then.
When we weren't dissipated, dwindled, mist.
Then. When we WERE. How I wish I could offer my son that, flawed and challenged as our life was then, at least it was not this mist. These silverfish. Cloaked progress. Muddied waters.
How do I find the road for him? I cannot get it wrong but so little of this has gone to plan.
This house, that was supposed to be the new Permanent. This house is only temporary. This is a station on the line. We got off here but I think we now await the next train. It feels...off. It feels like a funhouse mirror. Like that gingerbread cottage in the woods.
The thickness, the density of childhood dissipates as the years chew away at our hopes, our momentum. We wield the sword and slay the dragons, guard the castle. We dream our dreams, they morph into necessity, they morph into caring for what is larger than ourselves. They morph. And we are lost even to ourselves as we try to claw back what it was we were after in the first place.
I reminisce. I will not falter. I reminisce.
Three days will mark three years since the final Thanksgiving we spent with my father. My father who would have plenty to say about the fork this road took after he left us. My protector lives on in me. I deliver what he gave me to my son. There is no alternative. I know what I have to do and I do it and it really is that simple.
That Thanksgiving was one of the worst days of my life. Dad was dying. Dad had little to be thankful for on that day. He couldn't bear to look at Rukai, who'd crossed an ocean to be with him. Couldn't look at him because he feared so desperately that his only grandson would never know him. I promised him that he would and I won't let him down. If I do nothing else for my past in this present, I will not let him down.
That old Us was there again. But it wasn't us. It was the misty us. The toxic us. We were all vagabonds of the journey, tatty and frayed like a discarded tapestry, drawn together by the ending of one story and the beginning of the next. We gave thanks for whatever it was we could recover. That last thread of us that we'd managed to hang on to. And then we argued. And it rained. And we dissipated again.
I reminisce.
How to move on in the story from a life that has A list amounts of baggage. From a life that has so much to be forgotten yet so much I need to remember, because it is only that which cobbles together the path on which we walk. The past makes things matter, even if it is all temporary because we are always on the move. We cannot stop. We cannot falter.
I reminisce.
I reminisce because the history of us is the history of US. The other side of the mist is where my family now will come out, scathed or unscathed, scarred and burnt or covered in a glorious suntan, freckled like a disproportionately sunny Irish summer. Take your pick, we will glow, we will shine, we will rise and fall. We are all part of who we were and I will teach him that if I can do nothing else about Then.
My son wasn't with us Then.
He is here now.
That final Thanksgiving we could only give thanks that we were able to share a table and break bread and break hearts and break the chain of history to begin our tomorrow.
That final Thanksgiving we were thankful that we WERE.
That we are.
That we will be.
I give thanks.
I reminisce.
Sat in this house, that of the silverfish and slurping dehumidifier, that of the smaller lounge and larger bedrooms, of the drive and garage, of the clutter bloody EVERYWHERE and no time in this life to even dust it off.
I reminisce.
The past is firmly set there behind us, with all its sepia tinged sorrows and lost loved ones. All its missing friends and broken relationships and extracted toxicity. Tomorrow remains as unknown as today was to yesterday. We are on that journey, that ticket clasped in hand, the conductor shouting all aboard, let's ride. The destination board turning as we pass, hurried to get rolling, we know nothing of where we are headed but only that we go. We go into mist. We go because we must.
I reminisce.
Thanksgiving is as important to me now as it was to me as a kid, 14 years later in a country different than the one in which I was born. They don't celebrate it here. They don't but I will always. I celebrate. I give thanks.
I reminisce.
Then.
When we met as Family.
Then.
When we weren't dissipated, dwindled, mist.
Then. When we WERE. How I wish I could offer my son that, flawed and challenged as our life was then, at least it was not this mist. These silverfish. Cloaked progress. Muddied waters.
How do I find the road for him? I cannot get it wrong but so little of this has gone to plan.
This house, that was supposed to be the new Permanent. This house is only temporary. This is a station on the line. We got off here but I think we now await the next train. It feels...off. It feels like a funhouse mirror. Like that gingerbread cottage in the woods.
The thickness, the density of childhood dissipates as the years chew away at our hopes, our momentum. We wield the sword and slay the dragons, guard the castle. We dream our dreams, they morph into necessity, they morph into caring for what is larger than ourselves. They morph. And we are lost even to ourselves as we try to claw back what it was we were after in the first place.
I reminisce. I will not falter. I reminisce.
Three days will mark three years since the final Thanksgiving we spent with my father. My father who would have plenty to say about the fork this road took after he left us. My protector lives on in me. I deliver what he gave me to my son. There is no alternative. I know what I have to do and I do it and it really is that simple.
That Thanksgiving was one of the worst days of my life. Dad was dying. Dad had little to be thankful for on that day. He couldn't bear to look at Rukai, who'd crossed an ocean to be with him. Couldn't look at him because he feared so desperately that his only grandson would never know him. I promised him that he would and I won't let him down. If I do nothing else for my past in this present, I will not let him down.
That old Us was there again. But it wasn't us. It was the misty us. The toxic us. We were all vagabonds of the journey, tatty and frayed like a discarded tapestry, drawn together by the ending of one story and the beginning of the next. We gave thanks for whatever it was we could recover. That last thread of us that we'd managed to hang on to. And then we argued. And it rained. And we dissipated again.
I reminisce.
How to move on in the story from a life that has A list amounts of baggage. From a life that has so much to be forgotten yet so much I need to remember, because it is only that which cobbles together the path on which we walk. The past makes things matter, even if it is all temporary because we are always on the move. We cannot stop. We cannot falter.
I reminisce.
I reminisce because the history of us is the history of US. The other side of the mist is where my family now will come out, scathed or unscathed, scarred and burnt or covered in a glorious suntan, freckled like a disproportionately sunny Irish summer. Take your pick, we will glow, we will shine, we will rise and fall. We are all part of who we were and I will teach him that if I can do nothing else about Then.
My son wasn't with us Then.
He is here now.
That final Thanksgiving we could only give thanks that we were able to share a table and break bread and break hearts and break the chain of history to begin our tomorrow.
That final Thanksgiving we were thankful that we WERE.
That we are.
That we will be.
I give thanks.
I reminisce.
Thursday 19 November 2015
Glow little glow worm.
#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2The problem with life is it interferes with running. And blogging. And increasing Ye Olde Iron Arse. But nonetheless I've done my level best to continue all of these despite a honking three day meeting and a night without seeing my little Dude. Yet I survived, I ran, I maximized glutes and I lived to tell about it.
Last Sunday I started a run at dusk, kidding myself that I'd be able to do a couple laps of the local park then finish with a swoop around 'the block'. Needless to say - in the similar vein that I am not Paula Radcliffe - it is not June, it is NOVEMBER (What? How?!) and it gets dark in twentysixpointtwo seconds. So thankfully I had my deliciously green glow in the dark jacket on and after I stumbled through a very dark park to knock out the first lap, moved out onto the pavement for a few more around that mighty block.
Lo and behold pavement is a bit uneven. Who knew?
But I soldiered on, covered my planned just-over-six-miles and made it home unscathed. Have to say I'm not a fan of night running - folks like me have enough trouble coordinating breathing and not dying on a typical run - so I will do all I can to prevent it going forward. It looks like mid-day is my new best friend, although it may be a bit tricky to run carrying a laptop.Needless to say the strength training is not only integral to 'The Plan' but it is also completely having the desired effect, that being 'making me less likely to fall over and die' while running. And bless him, my Mini Coach Rukai is seeing to it that I stick to The Plan. Last time I chugged through my side steps across the kitchen he marched along with me for the full five reps. Forward to the end, I take the resistance band off and put it on the floor. Mini Coach demanded a few more. Apparently he had spotted Ye Olde Pudding Arse. And here I thought he wasn't paying attention.
But he's right - I'm not going to be finished with this or anything else that has to do with him til he says I am. My reason for being, my reason for racing. With pleasure, little Dude.
(Ok, ok, I'm going...)
Friday 6 November 2015
That love which is fierce.
I hate that Rukai has Down's syndrome. With every fibre of my being, I hate it.
There I said it.
But it's not why you may think.
In fact his condition, delays in development and challenges are in no way the reason. Because, quite simply, they are not the problem.
I hate that before Rukai was even born he was labeled. They started straight off with me, anointing me with 'High Risk' and 'Of Advanced Maternal Age'. Our nightmare pregnancy journey then moved to a virtual forest full of paper in the post telling me where to go and what tests to take, which cold white rooms to wait in. I was patronized and chided and frightened and later assigned 'Gestational Diabetic'. I was a wreck. That 'pregnancy glow' was little more than the light reflecting off all my constant tears.
Old. Flawed. Faulty. We will watch you very closely. What about 'congratulations'? What about 'first baby, you must be excited'? What about 'how are your folks feeling about becoming grandparents'?
I hate that Rukai has Down's syndrome because society has positioned disability in such a way that human beings can be so callously disregarded. Devalued.
Rukai hadn't yet taken a solitary breath, yet was plastered with 'Risk, One in 119'. He was 'Echogenic Focus' and 'Anomalies' and 'Here read this leaflet, take this blood test, let us stick a needle in your belly to determine whether we will have to advise you to end your pregnancy'. There whispering sweet nothings and holding hands with that big old six syllable pointed needle gut invasion, was 'Risk of Miscarriage Present But Not HIgh Enough To Matter'.
Beg your pardon? No. Sorry, not sorry. Mattered then, matters now. So glad we declined your prodding. Here, jam this needle in your guts and tell me about it.
Where they saw nothing but flaw, we saw our much wanted son, clouded by gargantuan fear we didn't have before they started injecting our lives with it.
'I'm sorry I couldn't give you better news,' said the sonographer.
Really? Well, I'm sorry you felt that 'it could be something, it could be nothing' was so dreadful it needed an apology.
High risk.
Of advanced maternal age.
Gestational diabetic.
Risk.
One in 119.
Echogenic focus.
Anomalies.
Wait --
Try mother and son.
Try it.
They daren't.
They couldn't.
They didn't.
He was our baby. Now he is our toddler. I have loved him the same since I saw those two blue lines on a plastic stick and bounded down the stairs to share the blissful news with my husband after years of trying to create him. There is no diminished hope or anticipation, there is no less love and joy than there was for the 'typical' baby we had expected on the day. And damn it all, weren't we fortunate to be steered on to a different road. The one that makes people stop and think of why anyone has any value in any life at all. The one that teaches us patience. And tolerance. The one that reminds us that we must now question EVERYTHING. Because there is so much more at stake when you are driven by fending off pity than when you are driven by funding a place in Cambridge University.
I hate that total strangers take what is special about my son and ruin it with pity.
I hate that society has lessened his value before they even have a chance of knowing him.
I hate that swathes of 'professionals' are perennially going to try and write his story for him.
I hate the assumptions. The closed minds. Hate all of it.
These all serve to ignite the fire called 'my love' all the way to magma. That love which is fierce, protective, frantic sometimes.
But it remains love. Like any other love, this love is precisely the same.
Unwaveringly the same.
When Rukai still lived in the safety of my womb I couldn't wait to be free of the intrusion of the naysayers. I envisioned carrying our new son as we strolled straight away from that hospital and left the blackness behind. I was so relieved when the day came for him to be 'out here'. And then he was born to a world which tries to shame us for our pride. That which has drained us emotionally every second since. From saying goddamn you, we are proud. Goddamn you, he is our SON. Who are you to judge him in this or any life?
I think not.
Yet we live. Beyond subsist, we LIVE. We live despite them.
I hate that the day he was born we were subjected to pity and predictions and negativity from pillar to post. Because all we saw from the moment we set eyes on him was our son and his very power. Hands in fists. Angry. So small yet so fierce. I knew then I'd let no one underestimate him.
And already there they called him flawed. 'Floppy'. 'Upslanting palpebral fissures'. 'Sandal toe gap'. The words still burn. I hate the pen that wrote them and the assumption behind each stroke and if I'm being perfectly honest, the person who wrote them for her carelessness.
I hate that in this life I have to be a Tiger Mom, because although I'm extremely well versed in the Art of Arguing, I really do genuinely despise conflict.
I hate that people feel sorry for us. If you want to pity me, pity the intrusion we are constantly subjected to. Pity the fact that our joyous birth experience was unceremoniously taken off us and chucked out with the lunch scraps and bloodied bandages. Pity the road our son has to walk with people forever thinking he can't. Having to prove himself forever that I am. I can. I will.
I hate Rukai's Down's syndrome because too many people refuse to strip it away and see only Rukai.
You don't know what you're missing. You don't know how amazing this child is. You don't know how lucky we are. How bright this road is. How crystalline the view is before us.
Some people call this road 'faith'. 'Religion'.
We just call it 'life with Rukai'.
There I said it.
But it's not why you may think.
In fact his condition, delays in development and challenges are in no way the reason. Because, quite simply, they are not the problem.
I hate that before Rukai was even born he was labeled. They started straight off with me, anointing me with 'High Risk' and 'Of Advanced Maternal Age'. Our nightmare pregnancy journey then moved to a virtual forest full of paper in the post telling me where to go and what tests to take, which cold white rooms to wait in. I was patronized and chided and frightened and later assigned 'Gestational Diabetic'. I was a wreck. That 'pregnancy glow' was little more than the light reflecting off all my constant tears.
Old. Flawed. Faulty. We will watch you very closely. What about 'congratulations'? What about 'first baby, you must be excited'? What about 'how are your folks feeling about becoming grandparents'?
I hate that Rukai has Down's syndrome because society has positioned disability in such a way that human beings can be so callously disregarded. Devalued.
Rukai hadn't yet taken a solitary breath, yet was plastered with 'Risk, One in 119'. He was 'Echogenic Focus' and 'Anomalies' and 'Here read this leaflet, take this blood test, let us stick a needle in your belly to determine whether we will have to advise you to end your pregnancy'. There whispering sweet nothings and holding hands with that big old six syllable pointed needle gut invasion, was 'Risk of Miscarriage Present But Not HIgh Enough To Matter'.
Beg your pardon? No. Sorry, not sorry. Mattered then, matters now. So glad we declined your prodding. Here, jam this needle in your guts and tell me about it.
Where they saw nothing but flaw, we saw our much wanted son, clouded by gargantuan fear we didn't have before they started injecting our lives with it.
'I'm sorry I couldn't give you better news,' said the sonographer.
Really? Well, I'm sorry you felt that 'it could be something, it could be nothing' was so dreadful it needed an apology.
High risk.Of advanced maternal age.
Gestational diabetic.
Risk.
One in 119.
Echogenic focus.
Anomalies.
Wait --
Try mother and son.
Try it.
They daren't.
They couldn't.
They didn't.
He was our baby. Now he is our toddler. I have loved him the same since I saw those two blue lines on a plastic stick and bounded down the stairs to share the blissful news with my husband after years of trying to create him. There is no diminished hope or anticipation, there is no less love and joy than there was for the 'typical' baby we had expected on the day. And damn it all, weren't we fortunate to be steered on to a different road. The one that makes people stop and think of why anyone has any value in any life at all. The one that teaches us patience. And tolerance. The one that reminds us that we must now question EVERYTHING. Because there is so much more at stake when you are driven by fending off pity than when you are driven by funding a place in Cambridge University.
I hate that total strangers take what is special about my son and ruin it with pity.
I hate that society has lessened his value before they even have a chance of knowing him.
I hate that swathes of 'professionals' are perennially going to try and write his story for him.
I hate the assumptions. The closed minds. Hate all of it.
These all serve to ignite the fire called 'my love' all the way to magma. That love which is fierce, protective, frantic sometimes.
But it remains love. Like any other love, this love is precisely the same.
Unwaveringly the same.
When Rukai still lived in the safety of my womb I couldn't wait to be free of the intrusion of the naysayers. I envisioned carrying our new son as we strolled straight away from that hospital and left the blackness behind. I was so relieved when the day came for him to be 'out here'. And then he was born to a world which tries to shame us for our pride. That which has drained us emotionally every second since. From saying goddamn you, we are proud. Goddamn you, he is our SON. Who are you to judge him in this or any life?
I think not.
Yet we live. Beyond subsist, we LIVE. We live despite them.
I hate that the day he was born we were subjected to pity and predictions and negativity from pillar to post. Because all we saw from the moment we set eyes on him was our son and his very power. Hands in fists. Angry. So small yet so fierce. I knew then I'd let no one underestimate him.
And already there they called him flawed. 'Floppy'. 'Upslanting palpebral fissures'. 'Sandal toe gap'. The words still burn. I hate the pen that wrote them and the assumption behind each stroke and if I'm being perfectly honest, the person who wrote them for her carelessness.
I hate that in this life I have to be a Tiger Mom, because although I'm extremely well versed in the Art of Arguing, I really do genuinely despise conflict.
I hate that people feel sorry for us. If you want to pity me, pity the intrusion we are constantly subjected to. Pity the fact that our joyous birth experience was unceremoniously taken off us and chucked out with the lunch scraps and bloodied bandages. Pity the road our son has to walk with people forever thinking he can't. Having to prove himself forever that I am. I can. I will.
I hate Rukai's Down's syndrome because too many people refuse to strip it away and see only Rukai.
You don't know what you're missing. You don't know how amazing this child is. You don't know how lucky we are. How bright this road is. How crystalline the view is before us.
Some people call this road 'faith'. 'Religion'.
We just call it 'life with Rukai'.
I want a big butt and I cannot lie.
#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2
It's amazing how much harder you focus on glute and hip strengthening exercises simply by reliving in your memory the excruciating pain they have the capacity to deliver over the Big Miles. So to prevent a re-run of the great big pain I endured during the last race, that which has kept me somewhat sidelined til yesterday, I have decided to acquire buns of steel, because achieving Iron Arse is quite likely the only way I will in any way be able to run 26.2 miles without breaking into pieces and leaving slivers of myself all down the course. I stand (ok, I sit at this precise moment, but stand sounds better) before you to pledge that under no circumstances will I be swept up and deposited into a dumpster, I am going for glory. And glory requires an enorm-ass. So hereafter I will ask my friends to call me Queen Clamshell. The Duchess of Derriere. The Baroness of Buns. But my lawdy, do enough of those exercises and it hurts. Yes! Good pain! Progress!
I never thought in all 44 years of life on this round earth I'd find myself wishing my backside were larger (who knew?!) but a decade and a half of slobbing around on the sofa had pretty much given me the physique of a frog til I started running. Dial up 2.5 years and many miles later, I have completely misplaced the monster glutes of my old dancer days. So much so that on walk breaks in that half-from-hell I was doing this superfunky waddle-while-squeezing-buns-each-step that could've put the stars of Strictly to shame. Heaven only knows what they'd call that particular dance or better, how Bruno would comment.
So after initiating Operation Monster Glutes yesterday morning, I got out later in the afternoon with the work run club for an uber gentle 5k . Finished with the tiniest of niggles, quickly resolved by a hot date with the foam roller. I did not burst into flames, that old 'Transport for London' baddie was appropriately de-knotted and the left knee today is feeling easy like Sunday morning (which is when the next run is booked in).
So right...
Started the strength programme? Check.
Bit of fundraising in and have commenced a plea for support on fundraising event? Check.
Back on the road? Check.
Righty-o. Hey buns, let's run.
http://uk.virginmoneygiving.com/MaxineNapal26.2
It's amazing how much harder you focus on glute and hip strengthening exercises simply by reliving in your memory the excruciating pain they have the capacity to deliver over the Big Miles. So to prevent a re-run of the great big pain I endured during the last race, that which has kept me somewhat sidelined til yesterday, I have decided to acquire buns of steel, because achieving Iron Arse is quite likely the only way I will in any way be able to run 26.2 miles without breaking into pieces and leaving slivers of myself all down the course. I stand (ok, I sit at this precise moment, but stand sounds better) before you to pledge that under no circumstances will I be swept up and deposited into a dumpster, I am going for glory. And glory requires an enorm-ass. So hereafter I will ask my friends to call me Queen Clamshell. The Duchess of Derriere. The Baroness of Buns. But my lawdy, do enough of those exercises and it hurts. Yes! Good pain! Progress!
I never thought in all 44 years of life on this round earth I'd find myself wishing my backside were larger (who knew?!) but a decade and a half of slobbing around on the sofa had pretty much given me the physique of a frog til I started running. Dial up 2.5 years and many miles later, I have completely misplaced the monster glutes of my old dancer days. So much so that on walk breaks in that half-from-hell I was doing this superfunky waddle-while-squeezing-buns-each-step that could've put the stars of Strictly to shame. Heaven only knows what they'd call that particular dance or better, how Bruno would comment.
So after initiating Operation Monster Glutes yesterday morning, I got out later in the afternoon with the work run club for an uber gentle 5k . Finished with the tiniest of niggles, quickly resolved by a hot date with the foam roller. I did not burst into flames, that old 'Transport for London' baddie was appropriately de-knotted and the left knee today is feeling easy like Sunday morning (which is when the next run is booked in).
So right...
Started the strength programme? Check.
Bit of fundraising in and have commenced a plea for support on fundraising event? Check.
Back on the road? Check.
Righty-o. Hey buns, let's run.
Hip hip hoor-aye yay yay.
#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2
I haven't had sore hips like this since I was pregnant. It's day seven after the second of two half marathons in three weeks that I thought I could easily handle (read: it seemed like a good idea at the time) but the last one seems to have handled me.
http://uk.virginmoneygiving.com/MaxineNapal26.2
I haven't had sore hips like this since I was pregnant. It's day seven after the second of two half marathons in three weeks that I thought I could easily handle (read: it seemed like a good idea at the time) but the last one seems to have handled me.
My wise physio tells me I have one of the tightest Transport For London muscles she's ever seen. It's really called something entirely different but I can't for the life of me remember that acronym without making up some other shit entirely.
So tight TFL threatens ITB and I hobbled home last Sunday third from the end of the Water of Life half marathon. I was expecting them to ask me to shut the lights out on my way but amazingly there were still people there when I finished. Like, five or six people, but hey I finished a freaking monstrous cross country pain fest. I got my bling. I know what I need to strengthen. And I got my first ever flying feet photo, so there's that.
So while I long to run, I have resorted to stretching and walking one more week til my legs stop protesting and I've convinced them that it's time to really get rocking and rolling for London.
That said, I think I should get hazard points for trying to do crunches with a three year old sitting on my guts. And best you don't even ask how painful foam rolling feels with a 25 pound body laying on top of the working leg. Bursting into flames isn't quite a strong enough analogy - my root canal was slightly less painful.
But bless my son's interest in the whole thing - I must be doing something right. Maybe one day we'll run this race together.
My hopes are high. My goals are lofty. And my foam roller beckons, so keep your ears peeled for an appropriately grisly scream coming right up, just in time for Halloween.
Roll roll roll your butt, gently now we screaaaaaaam.
Merrilly merrilly merrilly merrilly London is the dream!
Friday 30 October 2015
26.2 for the DSA and my Ru.
#RunningForRukai: Road to the 2016 London Marathon for the DSA
In April 2016, I'm going to attempt to do something I never dreamed possible for someONE I never dreamed possible - toe the line of the London Marathon and conquer those 26.2 miles in support of the Down's Syndrome Association and my gorgeous son Rukai, who has Ds. Rukai is a boisterous, energetic, engaging and very typical (yes, you read that right: typical!) little boy whose smile could light up Wembley. I wish everyone on earth could spend ten minutes with him, because the world would be better off for it.
Growing up, I never thought I'd need to call on a charity in my lifetime. Today, my gratitude is boundless. The DSA has supported Rukai and our family since day dot. They will continue to support Rukai long after we are gone so I am more than happy to support the DSA while I am able, and I'd be so grateful if you would too. And here, I'll tell you why...
Our little family had a ridiculously negative start. When Rukai was born, we were met with pity instead of congratulations. Whispers instead of smiles. The first interaction with a pediatrician after he was born was a registrar frowning as she said "you know why I'm here..." The clinic where I'd seen a specialist midwife for months was just down the hall, and it was a clinic day so she was probably there. But no one thought to ask her to come, someone I knew and trusted. Instead, we were surrounded by strangers with frowns. No congratulations, no he's beautiful, only "you know why I'm here..."
When Rukai's confirmed diagnosis was delivered a couple days later, I had been lying in the hospital bed holding him when a doctor and four other people (two whom I'd never seen before) paraded into my room, stopped in front of the bed and looked down at us. The doctor failed to notice Rukai's Dad wasn't present and began to speak. I had to stop him after he'd already revealed the news and asked my mother to go out and find my husband. We were later given worse case scenarios about what Rukai 'will need'. Four years on, few of those purported necessities have materialized. This place in which we live is most certainly not THAT place. And what Rukai really needs is love, education, friendship and a happy life, just like any other kid. The rest is periphery.
Sadly, the Down's Syndrome Association has heard dozens upon dozens of these kinds of stories and have cleverly developed a programme called "Tell it right, start it right" to help midwives and other medical people understand the nuances of delivering a diagnosis in a supportive, realistic and positive way, not with outdated facts, labeling, and an overabundance of pity. Now that Rukai is nearly 4, we know the reality of raising a child with Down's syndrome, and let me tell you - it is absolutely nothing like the doom and gloom we were led to believe! Rukai is just Rukai. He is not Down's syndrome.
I desperately don't want anyone else to have such a negative start. Please help me make sure they don't. Whether you can afford £2 or £20, every penny helps the DSA deliver this and a host of other programmes which support people with Ds, their families and all the professionals who provide support to us all day in and day out.
In the meantime, I will leave you with this thought...
The London Marathon is full of wacky costumed fun runners, most of whom are probably faster than me, even in costume. So I expect I may get passed up by a banana, a phone box, a leprechaun and a pair of testicles but as I live and breathe, I'm going to cross that line in April. For the DSA, for Rukai and for everyone who benefits from this amazing charity.
Now it's time to hit the bricks. I got this.
Please support the DSA here:
http://uk.virginmoneygiving.com/MaxineNapal26.2
Blogging about this marathon journey here:
https://www.realbuzz.com/blogs/u/redheaded2/26-2-for-the-dsa-and-my-ru/
In April 2016, I'm going to attempt to do something I never dreamed possible for someONE I never dreamed possible - toe the line of the London Marathon and conquer those 26.2 miles in support of the Down's Syndrome Association and my gorgeous son Rukai, who has Ds. Rukai is a boisterous, energetic, engaging and very typical (yes, you read that right: typical!) little boy whose smile could light up Wembley. I wish everyone on earth could spend ten minutes with him, because the world would be better off for it.
Growing up, I never thought I'd need to call on a charity in my lifetime. Today, my gratitude is boundless. The DSA has supported Rukai and our family since day dot. They will continue to support Rukai long after we are gone so I am more than happy to support the DSA while I am able, and I'd be so grateful if you would too. And here, I'll tell you why...
Our little family had a ridiculously negative start. When Rukai was born, we were met with pity instead of congratulations. Whispers instead of smiles. The first interaction with a pediatrician after he was born was a registrar frowning as she said "you know why I'm here..." The clinic where I'd seen a specialist midwife for months was just down the hall, and it was a clinic day so she was probably there. But no one thought to ask her to come, someone I knew and trusted. Instead, we were surrounded by strangers with frowns. No congratulations, no he's beautiful, only "you know why I'm here..."
When Rukai's confirmed diagnosis was delivered a couple days later, I had been lying in the hospital bed holding him when a doctor and four other people (two whom I'd never seen before) paraded into my room, stopped in front of the bed and looked down at us. The doctor failed to notice Rukai's Dad wasn't present and began to speak. I had to stop him after he'd already revealed the news and asked my mother to go out and find my husband. We were later given worse case scenarios about what Rukai 'will need'. Four years on, few of those purported necessities have materialized. This place in which we live is most certainly not THAT place. And what Rukai really needs is love, education, friendship and a happy life, just like any other kid. The rest is periphery.
Sadly, the Down's Syndrome Association has heard dozens upon dozens of these kinds of stories and have cleverly developed a programme called "Tell it right, start it right" to help midwives and other medical people understand the nuances of delivering a diagnosis in a supportive, realistic and positive way, not with outdated facts, labeling, and an overabundance of pity. Now that Rukai is nearly 4, we know the reality of raising a child with Down's syndrome, and let me tell you - it is absolutely nothing like the doom and gloom we were led to believe! Rukai is just Rukai. He is not Down's syndrome.
I desperately don't want anyone else to have such a negative start. Please help me make sure they don't. Whether you can afford £2 or £20, every penny helps the DSA deliver this and a host of other programmes which support people with Ds, their families and all the professionals who provide support to us all day in and day out.
In the meantime, I will leave you with this thought...
The London Marathon is full of wacky costumed fun runners, most of whom are probably faster than me, even in costume. So I expect I may get passed up by a banana, a phone box, a leprechaun and a pair of testicles but as I live and breathe, I'm going to cross that line in April. For the DSA, for Rukai and for everyone who benefits from this amazing charity.
Now it's time to hit the bricks. I got this.
Please support the DSA here:
http://uk.virginmoneygiving.com/MaxineNapal26.2
Blogging about this marathon journey here:
https://www.realbuzz.com/blogs/u/redheaded2/26-2-for-the-dsa-and-my-ru/
Wednesday 21 October 2015
Build it up.
[This post comes from a place of deep anger with a system I find completely broken. If cursing offends you, best avoid. Just a caveat - in no way an apology.]
I think those Tickboxes could very well appear in the next Avengers movie. They're like otherworldly antagonists, the pen wielded over them by maybe a doctor, 'Education', hell, maybe an ice cream vendor for all I know, but they are always present. They're like the freckles on my face, present. Like the freckles in winter, the boxes fade when we are left to our own devices, they take to the background, we don't think of them until we are placed before them. Like those judges on the Voice, those cowardly fuckers never turn around to square off.
Because we'd win.
And there they loom over us on the scribble pad of a person who is supposed to help us. They live, they breathe, they tear us down. They always fucking tear us down. Every time we lift ourselves up, those Tickboxes tear us down.
What an unkind life. A life trying to be so proud, so bold, so brave. I cannot hold the world on my back indefinitely. If I had my running shoes on right now, I'd do a Forrest Gump and run till my hair grew to my ankles and my skin turned the color of molasses.
There is nothing that will kick you in the face as hard as a doctor stating matter-of-factly that your going-on-four-year-old is developmentally 12 months old in some areas and 15 in others. I never asked her for this number, this neat packaging, same as my Dad, when dying of cancer never asked for that countdown til his last day. And lo and behold his countdown came true. Self fulfilling prophecy and all that. He even stopped turning the calendar pages. Why bother?
Dangerous stuff, those Tickboxes. Those Timings.
As I live and breathe I now know my purpose in this life and that is to refuse to allow The Tickbox and all this tallying and boxing up and ranking and rating and counting to dictate what my son will and will not achieve in his life. Til my dying day I will focus on nothing less. Tear us down and we'll build ourselves back up. You watch. You watch. You just flat out fucking watch.
New house, build it up
Who's gonna help me build it up
Bring me a hammer, build it up
Bring me a saw, build it up
Next thing you bring me
Is a building machine
Build it up. Build it up.
So doctor and The Tickbox kick you in the face with that godawful number you never asked for and though you entirely agree there is global delay, the actual quantifying of said delay is irrelevant because in reality, you go on with your day, every day, without the input of The Tickbox. Some Great Chart, like part of the Permanent Record we are threatened with from childhood, The Tickbox has invited itself in, gone to the fridge, cracked open a beer and planted its feet under our table.
I'm planting some choking vines around those feet, mate. Careful when you try to stand cos you're going to fall flat on that smarmy grin.
There is nothing else in our lives so bold and so irretrievably inappropriate than The Tickbox.
So damaging, so false a measurement of Truth.
So upsetting. Ugly crying upsetting. Beyond Ugly.
I get the your-kid-is-still-an-infant smack and subsequently ask what about his very advanced social skills? His curiosity and engagement with life and the world around him?
'Oh that doesn't matter as much', says she.
My head about fell off.
'To us as his parents it sure does', says I.
But apparently 'They' (this particular 'They' being 'Education') don't really give two blue squirrelly fucks about how capable someone is at engaging with the world around him if he can't hold a spoon. Who knew?
Shut my mouth and call me a Sherman Tank, I hadn't a clue.
'Isn't an essential part of life being able to socialize and be involved with other people?' says I.
And the answer came again: They don't care. Those Who Design The Lists Of Tickboxes don't care.
I think we are seriously living in the Matrix. I'm afraid to eat a steak lest it taste like a shoe insole now. Shame there really is no spoon cos I'd scoop up a motherload of bullshit with it right about now and fling it all over The Tickboxes.
And then we leave in the pissing rain. Even the sky was crying.
Always those who are most supposed to be helping us bring out those Ugly Tears. Not the stranger in the shop saying something stupid, not the worry about some well meaning mom at the park asking 'what's wrong with him' (never happened but it's my biggest fear) no no, those things don't actually rock our world. It's those who are supposed to help us who draw out the Ugly Tears.
How wrong is that. Just. How. Wrong.
That said, as my skin toughens along this journey when I get that roundhouse to the jaw it now first makes me sad. Don't get me wrong, it still fucks me off considerably but that is a wasted emotion because we have a life to live despite all the roadblocks. (Funny my typo fingers just spelled out roadbollocks).
The big problem I have is this. The system is setting him up to fail. Based upon this latest throttling it's occurred to me that they may not realize this but they sure are, sunny Jim.
Rukai is meant to begin formal education during the term after his fourth birthday. We have already felt a pressure to adhere to this timing. Being a February baby, this means he's supposed to start next September. Going to school with other four year olds, maybe a five or two, most of whom will already run, jump, count to ten, tally off the alphabet.
Use a toilet.
Feed themselves.
Use a cup.
Speak.
(Speak.)
Sing.
Wash their hands on their own.
The list goes on.
We're working on walking. Yes, Rukai is delayed. We don't need a number with which you perennially infantilize our kid to remind us that he's delayed. But now I'm awfully goddamn curious...what exactly do you tell a 45 year old with cerebral palsy when they physically can't walk? That they are walking at a 5 month old level? Or do you only infantilize people with disabilities when it comes to intellectual parameters?
That flat out fucks me off again. And here I thought I'd stopped being fucked off for the day. No, no. Hells no.
The Tickboxes.
The System.
Education.
Whose Box is it Anyway?
So Rukai will go to school and because he has a learning disability with a name it will be more straightforward to provide him help in terms of one to one support. Today I'm told it is because that developmental age is half of his chronological age. Help. One to one support. But wait, you're thinking...that sounds good. So what's the problem?
Throw away the reference to his advanced social skills, write up that report talking about a 12 to 15 month old and Rukai is henceforth sat at a desk in the corner working on spoon holding while his 'age peers' are moving further and further away from him. The risk of someone focusing on his struggle instead of drawing out what he excels at is too high. Those words on paper too heavy.
Treading water. Options...
Though not impossible, it's a gargantuan challenge to get a school to agree to a delayed entry. We have been waffling about it and after today I am once again thrown in a tailspin. But is this one person's forced negativity we are dealing with or is The System married to The Tickbox and procreating like hutched rabbits?
This fear, this panic, this is like disease. This is like the bad Gremlins. It's no bloody wonder I run.
So what then? We start him at five, yes, ideal. One more year to develop, to catch up. Super! Let's go!
Ok, so if they agree, wait...
Then in most cases he would have to skip the next year and go in with his age group peers. I don't know the ins and outs but it's something that sounds about like 'computer says no'.
Stay with age peers and he's instantly behind again.
Delay wins, regardless.
Ok, so back to starting him at four. With the physical ability level of a one year old. Great. Cracking idea!! Then the council has to provide enough support to keep him ticking along until which time he will inevitably fall behind his peers and they will inevitably recommend holding him back a year. Back to the group we thought he should start with from the beginning. Do you see this catch 22? I cannot understand the reasoning because all it looks like is: 'make the parents not want to bother with all the hassle to go mainstream and settle for putting the child in a special school'. Yes, the alternative is a special school from the get go.
No. No. No Fuckity No. That is not inclusion. The system is offering inclusion yet fights it all the while. This is broken. This is bamboozling.
I cannot find a happy place today. I am entirely at a loss.
Why is he going to be forced to tread that water? Just to mix with kids who...
(get ready)
...don't see anything different whatsoever in Rukai other than he may do things a bit slower. To them, Rukai is Rukai. His mates are his mates. They don't care about The Tickboxes. These kids will be his Life Peers. Don't their observations carry any weight?
All I know is that those who have been most damaging to Rukai's progress are all the services who are meant to help us. They with their Tickboxes. We are not negative in our lives til they enter. And I cannot slam the door in their face. They think they're helping. In some ways they are. In more - the deep, very utterly personal ones - they are doing quite the opposite.
This life is unkind. My son is my world. This unkind life is already trying to tear him down.
Ponder those thoughts at 3 am.
I am in a place where I have no answer. But it's different now then it was at the start, because I have the past.
We have the past. We have each other.
But my shell is cracking today. My head in my hands. I look inside. It churns.
I listen to him sleep over the monitor.
That monitor we use for babies. That monitor I'd use til he's 25 to know he's ok when he's sleeping.
Because my son is my world and this life is unkind.
Fuck your Tickboxes. You do not make our rules. You will not write his story.
Time still rolls. We roll along.
Build it up. Build it up. Build it up.
I think those Tickboxes could very well appear in the next Avengers movie. They're like otherworldly antagonists, the pen wielded over them by maybe a doctor, 'Education', hell, maybe an ice cream vendor for all I know, but they are always present. They're like the freckles on my face, present. Like the freckles in winter, the boxes fade when we are left to our own devices, they take to the background, we don't think of them until we are placed before them. Like those judges on the Voice, those cowardly fuckers never turn around to square off.
Because we'd win.
And there they loom over us on the scribble pad of a person who is supposed to help us. They live, they breathe, they tear us down. They always fucking tear us down. Every time we lift ourselves up, those Tickboxes tear us down.
What an unkind life. A life trying to be so proud, so bold, so brave. I cannot hold the world on my back indefinitely. If I had my running shoes on right now, I'd do a Forrest Gump and run till my hair grew to my ankles and my skin turned the color of molasses.
There is nothing that will kick you in the face as hard as a doctor stating matter-of-factly that your going-on-four-year-old is developmentally 12 months old in some areas and 15 in others. I never asked her for this number, this neat packaging, same as my Dad, when dying of cancer never asked for that countdown til his last day. And lo and behold his countdown came true. Self fulfilling prophecy and all that. He even stopped turning the calendar pages. Why bother?
Dangerous stuff, those Tickboxes. Those Timings.
As I live and breathe I now know my purpose in this life and that is to refuse to allow The Tickbox and all this tallying and boxing up and ranking and rating and counting to dictate what my son will and will not achieve in his life. Til my dying day I will focus on nothing less. Tear us down and we'll build ourselves back up. You watch. You watch. You just flat out fucking watch.
New house, build it up
Who's gonna help me build it up
Bring me a hammer, build it up
Bring me a saw, build it up
Next thing you bring me
Is a building machine
Build it up. Build it up.
So doctor and The Tickbox kick you in the face with that godawful number you never asked for and though you entirely agree there is global delay, the actual quantifying of said delay is irrelevant because in reality, you go on with your day, every day, without the input of The Tickbox. Some Great Chart, like part of the Permanent Record we are threatened with from childhood, The Tickbox has invited itself in, gone to the fridge, cracked open a beer and planted its feet under our table.
I'm planting some choking vines around those feet, mate. Careful when you try to stand cos you're going to fall flat on that smarmy grin.
There is nothing else in our lives so bold and so irretrievably inappropriate than The Tickbox.
So damaging, so false a measurement of Truth.
So upsetting. Ugly crying upsetting. Beyond Ugly.
I get the your-kid-is-still-an-infant smack and subsequently ask what about his very advanced social skills? His curiosity and engagement with life and the world around him?
'Oh that doesn't matter as much', says she.
My head about fell off.
'To us as his parents it sure does', says I.
But apparently 'They' (this particular 'They' being 'Education') don't really give two blue squirrelly fucks about how capable someone is at engaging with the world around him if he can't hold a spoon. Who knew?
Shut my mouth and call me a Sherman Tank, I hadn't a clue.
'Isn't an essential part of life being able to socialize and be involved with other people?' says I.
And the answer came again: They don't care. Those Who Design The Lists Of Tickboxes don't care.
I think we are seriously living in the Matrix. I'm afraid to eat a steak lest it taste like a shoe insole now. Shame there really is no spoon cos I'd scoop up a motherload of bullshit with it right about now and fling it all over The Tickboxes.
And then we leave in the pissing rain. Even the sky was crying.
Always those who are most supposed to be helping us bring out those Ugly Tears. Not the stranger in the shop saying something stupid, not the worry about some well meaning mom at the park asking 'what's wrong with him' (never happened but it's my biggest fear) no no, those things don't actually rock our world. It's those who are supposed to help us who draw out the Ugly Tears.
How wrong is that. Just. How. Wrong.
That said, as my skin toughens along this journey when I get that roundhouse to the jaw it now first makes me sad. Don't get me wrong, it still fucks me off considerably but that is a wasted emotion because we have a life to live despite all the roadblocks. (Funny my typo fingers just spelled out roadbollocks).
The big problem I have is this. The system is setting him up to fail. Based upon this latest throttling it's occurred to me that they may not realize this but they sure are, sunny Jim.
Rukai is meant to begin formal education during the term after his fourth birthday. We have already felt a pressure to adhere to this timing. Being a February baby, this means he's supposed to start next September. Going to school with other four year olds, maybe a five or two, most of whom will already run, jump, count to ten, tally off the alphabet.
Use a toilet.
Feed themselves.
Use a cup.
Speak.
(Speak.)
Sing.
Wash their hands on their own.
The list goes on.
We're working on walking. Yes, Rukai is delayed. We don't need a number with which you perennially infantilize our kid to remind us that he's delayed. But now I'm awfully goddamn curious...what exactly do you tell a 45 year old with cerebral palsy when they physically can't walk? That they are walking at a 5 month old level? Or do you only infantilize people with disabilities when it comes to intellectual parameters?
That flat out fucks me off again. And here I thought I'd stopped being fucked off for the day. No, no. Hells no.
The Tickboxes.
The System.
Education.
Whose Box is it Anyway?
So Rukai will go to school and because he has a learning disability with a name it will be more straightforward to provide him help in terms of one to one support. Today I'm told it is because that developmental age is half of his chronological age. Help. One to one support. But wait, you're thinking...that sounds good. So what's the problem?
Throw away the reference to his advanced social skills, write up that report talking about a 12 to 15 month old and Rukai is henceforth sat at a desk in the corner working on spoon holding while his 'age peers' are moving further and further away from him. The risk of someone focusing on his struggle instead of drawing out what he excels at is too high. Those words on paper too heavy.
Treading water. Options...
Though not impossible, it's a gargantuan challenge to get a school to agree to a delayed entry. We have been waffling about it and after today I am once again thrown in a tailspin. But is this one person's forced negativity we are dealing with or is The System married to The Tickbox and procreating like hutched rabbits?
This fear, this panic, this is like disease. This is like the bad Gremlins. It's no bloody wonder I run.
So what then? We start him at five, yes, ideal. One more year to develop, to catch up. Super! Let's go!
Ok, so if they agree, wait...
Then in most cases he would have to skip the next year and go in with his age group peers. I don't know the ins and outs but it's something that sounds about like 'computer says no'.
Stay with age peers and he's instantly behind again.
Delay wins, regardless.
Ok, so back to starting him at four. With the physical ability level of a one year old. Great. Cracking idea!! Then the council has to provide enough support to keep him ticking along until which time he will inevitably fall behind his peers and they will inevitably recommend holding him back a year. Back to the group we thought he should start with from the beginning. Do you see this catch 22? I cannot understand the reasoning because all it looks like is: 'make the parents not want to bother with all the hassle to go mainstream and settle for putting the child in a special school'. Yes, the alternative is a special school from the get go.
No. No. No Fuckity No. That is not inclusion. The system is offering inclusion yet fights it all the while. This is broken. This is bamboozling.
I cannot find a happy place today. I am entirely at a loss.
Why is he going to be forced to tread that water? Just to mix with kids who...
(get ready)
...don't see anything different whatsoever in Rukai other than he may do things a bit slower. To them, Rukai is Rukai. His mates are his mates. They don't care about The Tickboxes. These kids will be his Life Peers. Don't their observations carry any weight?
All I know is that those who have been most damaging to Rukai's progress are all the services who are meant to help us. They with their Tickboxes. We are not negative in our lives til they enter. And I cannot slam the door in their face. They think they're helping. In some ways they are. In more - the deep, very utterly personal ones - they are doing quite the opposite.
This life is unkind. My son is my world. This unkind life is already trying to tear him down.
Ponder those thoughts at 3 am.
I am in a place where I have no answer. But it's different now then it was at the start, because I have the past.
We have the past. We have each other.
But my shell is cracking today. My head in my hands. I look inside. It churns.
I listen to him sleep over the monitor.
That monitor we use for babies. That monitor I'd use til he's 25 to know he's ok when he's sleeping.
Because my son is my world and this life is unkind.
Fuck your Tickboxes. You do not make our rules. You will not write his story.
Time still rolls. We roll along.
Build it up. Build it up. Build it up.
Tuesday 6 October 2015
First steps.
It wasn’t much to say but there he went and said it. “First steps.”
He looked about in his late sixties - one tanned guy full of vitality, pausing from his bicycle jaunt around the beautiful South Devon seafront. We were in the middle of our end-of-summer vacation, strolling along, luckily soaking up the last of the sunshine before the rainy season closes in. Rukai had one hand in mine, one in my husband's, and two feet chasing each other's shadows down the pavement in that gangly, stompy, slightly stiff-legged way all new walkers go forth and conquer.
Toddle, toddle. Pause, look at shoes. Look up at me, grinning. At Dad, grinning. Toddle, toddle.
We'd just been observing the boats moored in the harbor, and turned to find him there - an apparition of hope perched on two wheels, uttering those two magic words.
“First steps.” A huge smile. We all smiled back. But Rukai had more important things to do than to engage in conversation. No time, mama. I'm practicing. He tugged us back towards the path.
Toddle, toddle.
Sweet Rukai had been missing during the past few days, substituted by his secret ornery persona we've lovingly called Captain Crabbo. He wouldn't eat what we gave him, he didn't want to be in the house nor leave it, not in the car, not in the swimming pool. I wasn't allowed to dress him nor help him get dressed. I couldn't brush his teeth, peel a banana the right way, sing along with anything on TV, nor breathe to his satisfaction. Yet we persevered. As you do.
With Down's syndrome and it's delay, the Terrible Twos becomes an entirely new adventure. It's like a triple-length miniseries of Tot Terror. Some days that tunnel-ending light is covered over completely, like east London windows during the Blitz. Keep 'em covered til the danger has passed. He's going on four. This is a long road.
All kids go through Terrible Twos, but unfortunately for us, the longevity of this developmental stage brings with it that old Fear chestnut and its brutal questions: "what if he has a sensory disorder? Why doesn't he talk yet? I wish I could get him to control that spoon better. When will he stop casting?" For days, the sense of being overwhelmed quietly threatened - like those black boiling clouds that precede a hurricane, there it was. That fear which is the monster under my bed. Worse - it's the thing that eats the thing I'm afraid of. It's the Big Fear. The Great Unknown. Ye Olde 'What if?'
But no. Not today. No What If. Just what is. One life-experienced dude on a bike grinning at a toddler toddling. Two male creatures on either end of the life cycle grooving in the sunshine. The timing of this encounter was impeccable.
We bid farewell to bicycle guy, looked back at each other and smiled. Yes, yes, these days are New. But aren't they all?
He is three. These are indeed First Steps. There will be Seconds. Twentieths. They will all come one after the other, toppling like dominos, that happy click-clacking reminding us that in order to get there we always have to start from here. From somewhere. Tip the first block and every one thereafter will fall into its place. Still, we cannot predict precisely what that place will be. Life's mystery.
"First steps."
Easy does it. Every something new we take as it comes, one foot in front of the other. Our first steps as a family. Our first steps on this unknown journey.
We walk together along the sunny seafront that keeps those crashing waves at bay.
He looked about in his late sixties - one tanned guy full of vitality, pausing from his bicycle jaunt around the beautiful South Devon seafront. We were in the middle of our end-of-summer vacation, strolling along, luckily soaking up the last of the sunshine before the rainy season closes in. Rukai had one hand in mine, one in my husband's, and two feet chasing each other's shadows down the pavement in that gangly, stompy, slightly stiff-legged way all new walkers go forth and conquer.
Toddle, toddle. Pause, look at shoes. Look up at me, grinning. At Dad, grinning. Toddle, toddle.
We'd just been observing the boats moored in the harbor, and turned to find him there - an apparition of hope perched on two wheels, uttering those two magic words.
“First steps.” A huge smile. We all smiled back. But Rukai had more important things to do than to engage in conversation. No time, mama. I'm practicing. He tugged us back towards the path.
Toddle, toddle.
Sweet Rukai had been missing during the past few days, substituted by his secret ornery persona we've lovingly called Captain Crabbo. He wouldn't eat what we gave him, he didn't want to be in the house nor leave it, not in the car, not in the swimming pool. I wasn't allowed to dress him nor help him get dressed. I couldn't brush his teeth, peel a banana the right way, sing along with anything on TV, nor breathe to his satisfaction. Yet we persevered. As you do.
With Down's syndrome and it's delay, the Terrible Twos becomes an entirely new adventure. It's like a triple-length miniseries of Tot Terror. Some days that tunnel-ending light is covered over completely, like east London windows during the Blitz. Keep 'em covered til the danger has passed. He's going on four. This is a long road.
All kids go through Terrible Twos, but unfortunately for us, the longevity of this developmental stage brings with it that old Fear chestnut and its brutal questions: "what if he has a sensory disorder? Why doesn't he talk yet? I wish I could get him to control that spoon better. When will he stop casting?" For days, the sense of being overwhelmed quietly threatened - like those black boiling clouds that precede a hurricane, there it was. That fear which is the monster under my bed. Worse - it's the thing that eats the thing I'm afraid of. It's the Big Fear. The Great Unknown. Ye Olde 'What if?'
But no. Not today. No What If. Just what is. One life-experienced dude on a bike grinning at a toddler toddling. Two male creatures on either end of the life cycle grooving in the sunshine. The timing of this encounter was impeccable.
We bid farewell to bicycle guy, looked back at each other and smiled. Yes, yes, these days are New. But aren't they all?
He is three. These are indeed First Steps. There will be Seconds. Twentieths. They will all come one after the other, toppling like dominos, that happy click-clacking reminding us that in order to get there we always have to start from here. From somewhere. Tip the first block and every one thereafter will fall into its place. Still, we cannot predict precisely what that place will be. Life's mystery.
"First steps."
Easy does it. Every something new we take as it comes, one foot in front of the other. Our first steps as a family. Our first steps on this unknown journey.
We walk together along the sunny seafront that keeps those crashing waves at bay.
Friday 18 September 2015
We fly or we fall and that is all.
You there, in the lab coat. Yes you. Put down the pen.
We need to talk.
You haven't really looked up since we walked in. Last I checked, we were here for you to examine my son, and there you've only been asking leading questions and making notes, rating him against some invisible scale and ticking boxes. It's incredible! That pen hasn't stopped. Your questions haven't stopped. And your paper has received far more attention than Rukai has, which tells me that frankly, you are flat out wasting our time.
Again.
I have to tell you that it's beyond difficult for me to extend the courtesy of calling you 'Doctor'. It's difficult because my son's name is Rukai and in the five minutes since we sat down you have yet to say it. It's difficult because my name is Maxine and you keep calling me 'Mum'. And there's that pen, scribbling. Scribbling. Ticking boxes. Ticking me off.
You HAVE called Rukai 'They'. You HAVE compared him to thousands of other people with a similar condition, but at last check, good sir, these other people are not Rukai and Rukai is not them. And I am not your Mum.
You have an expectation that we will hang on every word and follow your directions to the letter. That we will gladly come back for you to monitor something that's not presenting itself as a problem in reality. But on paper, it MAY. And therefore you have clear guidelines as to what you should statistically be monitoring.
But the thing is, unless there is some secret spare room in our home that you are living in, I'm afraid the scale tips to me when it comes to identifying what we should be monitoring. Just because Rukai has a disability does not mean that we are unable to look after him. If there were no third copy of the 21st chromosome floating around in his blood, you wouldn't even consider his current condition worth monitoring. He is developmentally delayed and that is all. Other than that, we just don't see any issues. But there you all just keep LOOKING for them.
Rukai is a unique individual, just like you, and as HIS Mum, I know him best. If you had spent these first five minutes looking at us and asking me whether I'd noticed any changes, or how his behavior had been recently, If you had spent these first five minutes engaging with your patient -one boy named Rukai - rather than immediately begin comparing him to thousands of other people, you would have his truth before you. I don't care how many patients you have seen over the years, you have not met Rukai until today, and today is when you first learn about Rukai.
Statistics are guesswork. Life is too short to live tunnel-visioned in the grey. Statistically I wasn't supposed to leave America, move to England and marry an Asian man. Statistically, an Ivy League graduate is not supposed to become destitute and die of alcoholism. Statistically you’re not supposed to be able to land a jumbo jet on the Hudson River. Do you now register the falsehood of supposition?
We fly or we fall and that is all.
I find it both comedy and tragedy that society is perennially patting itself on the back for celebrating difference: in religious belief, gender identity, political persuasion, hair color, body shape, cripes how much time have you got? Yet here, where it really matters, when you're talking about the very thing that makes us unique -genetic material, human DNA - you group, box up and throw away. You spout 'They' and tick those damned boxes.
The ridiculousness of it is astonishing.
And now that you've not paid him any attention, you go and run some play based testing. And guess what? Just like any other kid on earth, if you aren't engaged with him, he won't be interested in you. And he won't play. Do not DARE assume this means he cannot.
And you write in terms of how he 'is'. Based upon 60 minutes of a life that has already gone on days, weeks, years without you in it. 60 minutes with your pen inking commentary which would fade and wash away if you left it out in the rain.
Place Rukai out in the rain and he will tilt his head back and laugh and flinch and maybe go and stomp a puddle. He will not fade. He will not wash away.
I appreciate your time is limited, so we have to wrap up this meeting. But our time is limited too. So unless we notice a problem, we're going to be a bit more selective about how much of that time is spent with you in the future.
In the mean time, I'd ask you to remember what brought you to medicine in the first place. You wanted to care for people. To serve. To listen and to respect. To advise and to heal. But with years of practice, I'm sure there's monotony, repetition, boredom. Paperwork. I suspect it's become far too easy to categorize people just to get that revolving door of endless patients to cease spinning. It's so much easier to find a common thread and close the chapter than to uncover a new story. But I challenge you to remember why it matters to society that we celebrate difference. Remember why Rukai matters. Because we all have a unique contribution to this life, 46 chromosomes, 47, whatever count, he COUNTS. He has a name, and a story, and unique potential. He has likes and dislikes. He is not 'They'.
Your pen and that notepad will not remember this day but I will. Don't make me remember you as someone who threw away my only child but rather as someone who 'got it'. There is very little I need more from you.
Good day, Doctor.
We need to talk.
You haven't really looked up since we walked in. Last I checked, we were here for you to examine my son, and there you've only been asking leading questions and making notes, rating him against some invisible scale and ticking boxes. It's incredible! That pen hasn't stopped. Your questions haven't stopped. And your paper has received far more attention than Rukai has, which tells me that frankly, you are flat out wasting our time.
Again.
I have to tell you that it's beyond difficult for me to extend the courtesy of calling you 'Doctor'. It's difficult because my son's name is Rukai and in the five minutes since we sat down you have yet to say it. It's difficult because my name is Maxine and you keep calling me 'Mum'. And there's that pen, scribbling. Scribbling. Ticking boxes. Ticking me off.
You HAVE called Rukai 'They'. You HAVE compared him to thousands of other people with a similar condition, but at last check, good sir, these other people are not Rukai and Rukai is not them. And I am not your Mum.
You have an expectation that we will hang on every word and follow your directions to the letter. That we will gladly come back for you to monitor something that's not presenting itself as a problem in reality. But on paper, it MAY. And therefore you have clear guidelines as to what you should statistically be monitoring.
But the thing is, unless there is some secret spare room in our home that you are living in, I'm afraid the scale tips to me when it comes to identifying what we should be monitoring. Just because Rukai has a disability does not mean that we are unable to look after him. If there were no third copy of the 21st chromosome floating around in his blood, you wouldn't even consider his current condition worth monitoring. He is developmentally delayed and that is all. Other than that, we just don't see any issues. But there you all just keep LOOKING for them.
Rukai is a unique individual, just like you, and as HIS Mum, I know him best. If you had spent these first five minutes looking at us and asking me whether I'd noticed any changes, or how his behavior had been recently, If you had spent these first five minutes engaging with your patient -one boy named Rukai - rather than immediately begin comparing him to thousands of other people, you would have his truth before you. I don't care how many patients you have seen over the years, you have not met Rukai until today, and today is when you first learn about Rukai.
Statistics are guesswork. Life is too short to live tunnel-visioned in the grey. Statistically I wasn't supposed to leave America, move to England and marry an Asian man. Statistically, an Ivy League graduate is not supposed to become destitute and die of alcoholism. Statistically you’re not supposed to be able to land a jumbo jet on the Hudson River. Do you now register the falsehood of supposition?
We fly or we fall and that is all.
I find it both comedy and tragedy that society is perennially patting itself on the back for celebrating difference: in religious belief, gender identity, political persuasion, hair color, body shape, cripes how much time have you got? Yet here, where it really matters, when you're talking about the very thing that makes us unique -genetic material, human DNA - you group, box up and throw away. You spout 'They' and tick those damned boxes.
The ridiculousness of it is astonishing.
And now that you've not paid him any attention, you go and run some play based testing. And guess what? Just like any other kid on earth, if you aren't engaged with him, he won't be interested in you. And he won't play. Do not DARE assume this means he cannot.
And you write in terms of how he 'is'. Based upon 60 minutes of a life that has already gone on days, weeks, years without you in it. 60 minutes with your pen inking commentary which would fade and wash away if you left it out in the rain.
Place Rukai out in the rain and he will tilt his head back and laugh and flinch and maybe go and stomp a puddle. He will not fade. He will not wash away.
I appreciate your time is limited, so we have to wrap up this meeting. But our time is limited too. So unless we notice a problem, we're going to be a bit more selective about how much of that time is spent with you in the future.
In the mean time, I'd ask you to remember what brought you to medicine in the first place. You wanted to care for people. To serve. To listen and to respect. To advise and to heal. But with years of practice, I'm sure there's monotony, repetition, boredom. Paperwork. I suspect it's become far too easy to categorize people just to get that revolving door of endless patients to cease spinning. It's so much easier to find a common thread and close the chapter than to uncover a new story. But I challenge you to remember why it matters to society that we celebrate difference. Remember why Rukai matters. Because we all have a unique contribution to this life, 46 chromosomes, 47, whatever count, he COUNTS. He has a name, and a story, and unique potential. He has likes and dislikes. He is not 'They'.
Your pen and that notepad will not remember this day but I will. Don't make me remember you as someone who threw away my only child but rather as someone who 'got it'. There is very little I need more from you.
Good day, Doctor.
Tuesday 11 August 2015
Just what you wished for.
It starts with a visit to a grotty old building, tucked away in the middle of some road on the side of town you aren't interested in visiting now, later, ever. But it is there you go because that's where They tell you to go.
They deny your husband access to the first conversation. Your conversation. About his child. Because he is guilty before being proven innocent. Accused of behavior he would not, could not display. "But he's taken the day off for this," says you. You are rebuffed. For the first time, rebuffed. For the first time, but not the last.
"Sorry, WE run this. You in, him out."
"Oh!" says you. Your eyes meet. There is a chasm of sorrow in his. Enter anger. You turn and step inside. You pay little attention to your conversation because it is missing half of what created the need for it.
Oh.
Minutes, days, weeks, pass and pass and pass. The child grows. The child grows and the worries grow because you are no longer a young mother, but you are of Advanced Maternal Age. You are to be owned because what you have will surely become their Burden. Their Financial Bugbear.
Imagined and foolhardy as this presumption is, they are confident of it, having seen it through their invisible crystal ball, formed of statistics and 20 minute observations. Of small samples and a history that quashed and hid away and ruined each and every possibility.
Those beliefs formed by believing in labels and supposition and to hell with actualities.
They OWN you. Still, they fear what you have. You have the strength and the knowledge and the belief that it is ok now. That it will be ok tomorrow. You have a spine of steel and resolve to match. And you deliver.
You speak the words. "Whether it lives eight minutes, eight days or eight decades, we are going to have this baby."
And oh how They fear you! Because you do not fear them. And you speak, and you speak and you speak, my God how you speak. If you do anything from today into forever it is that thing which you must do and do without hesitation, without reservation.
Speak. Until he can speak, you just go on and SPEAK.
They hand you another form, this a booking form for this blood test, that follow up appointment, two more hours of life wasted away staring at hospital walls with scowling staff who don't have a clue how much love you have for this little bump already. Who don't have the foggiest idea of what his possibilty is. They can't predict this any more than they can tell you he will have his grandpa's hair and his daddy's eyelashes. Just what you wished for.
Just that.
So you wait and you talk and they do their best again to prevent that joy from blossoming because when that joy blossoms, it explodes to the very milky WAY, it is intergalactic, it is nothing they could ever possibly know. They of the scowls and lab coats and tests which prove nothing more than assumptions are nothing. They are 50/50. One assumption tells you "it could be something, it could be nothing." To bleed fear on maybeitismaybeitisn't is the only suffering being done in this entire situation. Despite the gargantuan amount of suffering They tell you the child will face.
This, you will discover, is a nonsense.
One assumption tells you this is a HE. This assumption tells you my SON. It is a son.
But this you knew already. Because that bump lives in you and not in those cold corridors. And you danced around the house cradling that bump. You took the earbud headphone and popped it into your belly button so he could jive to Stevie Wonder and groove to the Grateful Dead. You danced and rejoiced and did your best to find your joy while they rattled your cage with their worry. Their words consistently delivering blows, you dreaded skulking back down the shining white corridor of the negative to get the wind knocked out of you again. Deep breath. Stand up. Stand up. Stand. Up.
This place is like a cloak. This place covers and mashes and smothers and denies.
Joy.
He arrives. They scurry across the room. They who didn't want him to be and there he IS. They didn't want him to be because their crystal ball says he will be unwell. He will need FIXING. Fix him, he's broken, he's wrong, he's not what we want to deal with, he is a predicament. They frown at you, the corners of their mouths poking up in artificial smiles. You cradle him. You love him. He is your joy.
(What you are and what you're meant to be,
speaks his name though you were born to me.*)
They scurry and scurry. Like rats they scurry. Picking at the scraps you leave behind because they cannot have the main course, this is LIFE on the menu. This is joy.
Don't go choking on those bones, you rats. You have been warned, there is nothing for you here. Best you listen to a Mother next time. Learn. Think you know? Learn more. Go.
Years pass. Time is slow. Achievements are enormous. You begin to identify the reality. That he really can dance. That he seeks out the boombox and presses that button. That he grabs your hands so that you can march to and fro and around and around and around to Monster Mash. That fun magical song you loved too. He marches. He watches you like a hawk. You passé and he passés. You jump and he lifts those heels up and down up and down. He DANCES. Weeping, weeping, whirling and twirling, this is magic, this is Love. This is JOY.
Still he doesn't speak. He works on telling you things with his hands. Sign language. This wasn't part of the plan but ok, as long as you've passed the ram it down our throats phase you run with it. You identify what you think he needs. They are in the back seat. You have developed the ability to tune them out. This is your get out of jail free card. Forever.
They who thought he should not Be, yet once he arrived They tried for so long to dictate how you should help him Be. And you say "no. No you won't. You didn't want him, do you remember? Do you see? Do you see it now? Open your eyes. We see. This reality is not your house of horrors. You have forfeited your control with your negativity. Too bad, not sad."
Joy. Ours is Joy.
You proceed to ask for help where you think it's necessary. But you only get instructions. Orders. Is help out there? Time will tell. You see what they say they have observed but you know he is far more. He is greater than an A4 sheet of observations. You write and deliver them the truth. The truth that he is infinite, he is telling THEM his story. They will not steal it and attempt to write it for him because he is more than they can ever imagine themselves to be. They are signposts, they are tick boxes, they are not Help. And they will not steal him from himself.
So you read. You learn. You guide. You work. You talk. You write. You share. You analyze. You converse. You ask.
You teach. You teach. You teach.
The music plays and you remember. You remember what your road looked like at the start. The scenery along the sides, the trees and the rain and the smell of the wet moss. You have walked some of it, danced some of it, run some of it. The smell renewed after every downpour. The rain cleanses. The music nourishes. The words your salve. Your salvation.
He is three and a half. The world will soon take him in. Take him ON. You worry if you have done enough.
Yes. Always.
_____
Fare thee well now
Let your life proceed by its own design
Nothing to tell now
Let the words be yours, I'm done with mine
Flight of the seabirds
Scattered like lost words
Wield to the storm and fly.
* Grateful Dead, 'Cassidy'
They deny your husband access to the first conversation. Your conversation. About his child. Because he is guilty before being proven innocent. Accused of behavior he would not, could not display. "But he's taken the day off for this," says you. You are rebuffed. For the first time, rebuffed. For the first time, but not the last.
"Sorry, WE run this. You in, him out."
"Oh!" says you. Your eyes meet. There is a chasm of sorrow in his. Enter anger. You turn and step inside. You pay little attention to your conversation because it is missing half of what created the need for it.
Oh.
Minutes, days, weeks, pass and pass and pass. The child grows. The child grows and the worries grow because you are no longer a young mother, but you are of Advanced Maternal Age. You are to be owned because what you have will surely become their Burden. Their Financial Bugbear.
Imagined and foolhardy as this presumption is, they are confident of it, having seen it through their invisible crystal ball, formed of statistics and 20 minute observations. Of small samples and a history that quashed and hid away and ruined each and every possibility.
Those beliefs formed by believing in labels and supposition and to hell with actualities.
They OWN you. Still, they fear what you have. You have the strength and the knowledge and the belief that it is ok now. That it will be ok tomorrow. You have a spine of steel and resolve to match. And you deliver.
You speak the words. "Whether it lives eight minutes, eight days or eight decades, we are going to have this baby."
And oh how They fear you! Because you do not fear them. And you speak, and you speak and you speak, my God how you speak. If you do anything from today into forever it is that thing which you must do and do without hesitation, without reservation.
Speak. Until he can speak, you just go on and SPEAK.
They hand you another form, this a booking form for this blood test, that follow up appointment, two more hours of life wasted away staring at hospital walls with scowling staff who don't have a clue how much love you have for this little bump already. Who don't have the foggiest idea of what his possibilty is. They can't predict this any more than they can tell you he will have his grandpa's hair and his daddy's eyelashes. Just what you wished for.
Just that.
So you wait and you talk and they do their best again to prevent that joy from blossoming because when that joy blossoms, it explodes to the very milky WAY, it is intergalactic, it is nothing they could ever possibly know. They of the scowls and lab coats and tests which prove nothing more than assumptions are nothing. They are 50/50. One assumption tells you "it could be something, it could be nothing." To bleed fear on maybeitismaybeitisn't is the only suffering being done in this entire situation. Despite the gargantuan amount of suffering They tell you the child will face.
This, you will discover, is a nonsense.
One assumption tells you this is a HE. This assumption tells you my SON. It is a son.
But this you knew already. Because that bump lives in you and not in those cold corridors. And you danced around the house cradling that bump. You took the earbud headphone and popped it into your belly button so he could jive to Stevie Wonder and groove to the Grateful Dead. You danced and rejoiced and did your best to find your joy while they rattled your cage with their worry. Their words consistently delivering blows, you dreaded skulking back down the shining white corridor of the negative to get the wind knocked out of you again. Deep breath. Stand up. Stand up. Stand. Up.
This place is like a cloak. This place covers and mashes and smothers and denies.
Joy.
He arrives. They scurry across the room. They who didn't want him to be and there he IS. They didn't want him to be because their crystal ball says he will be unwell. He will need FIXING. Fix him, he's broken, he's wrong, he's not what we want to deal with, he is a predicament. They frown at you, the corners of their mouths poking up in artificial smiles. You cradle him. You love him. He is your joy.
(What you are and what you're meant to be,
speaks his name though you were born to me.*)
They scurry and scurry. Like rats they scurry. Picking at the scraps you leave behind because they cannot have the main course, this is LIFE on the menu. This is joy.
Don't go choking on those bones, you rats. You have been warned, there is nothing for you here. Best you listen to a Mother next time. Learn. Think you know? Learn more. Go.
Years pass. Time is slow. Achievements are enormous. You begin to identify the reality. That he really can dance. That he seeks out the boombox and presses that button. That he grabs your hands so that you can march to and fro and around and around and around to Monster Mash. That fun magical song you loved too. He marches. He watches you like a hawk. You passé and he passés. You jump and he lifts those heels up and down up and down. He DANCES. Weeping, weeping, whirling and twirling, this is magic, this is Love. This is JOY.
Still he doesn't speak. He works on telling you things with his hands. Sign language. This wasn't part of the plan but ok, as long as you've passed the ram it down our throats phase you run with it. You identify what you think he needs. They are in the back seat. You have developed the ability to tune them out. This is your get out of jail free card. Forever.
They who thought he should not Be, yet once he arrived They tried for so long to dictate how you should help him Be. And you say "no. No you won't. You didn't want him, do you remember? Do you see? Do you see it now? Open your eyes. We see. This reality is not your house of horrors. You have forfeited your control with your negativity. Too bad, not sad."
Joy. Ours is Joy.
You proceed to ask for help where you think it's necessary. But you only get instructions. Orders. Is help out there? Time will tell. You see what they say they have observed but you know he is far more. He is greater than an A4 sheet of observations. You write and deliver them the truth. The truth that he is infinite, he is telling THEM his story. They will not steal it and attempt to write it for him because he is more than they can ever imagine themselves to be. They are signposts, they are tick boxes, they are not Help. And they will not steal him from himself.
So you read. You learn. You guide. You work. You talk. You write. You share. You analyze. You converse. You ask.
You teach. You teach. You teach.
The music plays and you remember. You remember what your road looked like at the start. The scenery along the sides, the trees and the rain and the smell of the wet moss. You have walked some of it, danced some of it, run some of it. The smell renewed after every downpour. The rain cleanses. The music nourishes. The words your salve. Your salvation.
He is three and a half. The world will soon take him in. Take him ON. You worry if you have done enough.
Yes. Always.
_____
Fare thee well now
Let your life proceed by its own design
Nothing to tell now
Let the words be yours, I'm done with mine
Flight of the seabirds
Scattered like lost words
Wield to the storm and fly.
* Grateful Dead, 'Cassidy'
Saturday 2 May 2015
To the Doctor who Reached Out.
Four medical appointments over 12 days.
Four.
Rukai spots a bit of fluff in the carpeting from twenty paces and goes to retrieve it.
"We must monitor his vision. THEIR eyes are commonly not working properly."
A rattle of keys in the front door turns his head. His eyes go wide and fingers point at the arrival of his Daddy. Down the hall, I open the bathroom door. One door is quickly disregarded for the other and he comes charging down the hallway to interrupt me, his curiosity piqued.
"We must monitor his hearing. THEY commonly have hearing loss."
Pediatrician 1 cannot confirm another issue, off to Pediatrician 2. I tell Pediatrician 2 that over the years, we have left off therapists and unnecessary appointments because Rukai is driving his own development. We don't want his default to change from easygoing, chilled, to pressured, overworked.
He's only 3. A three year old should not be overworked. A three year old should play. A three year old should not sacrifice his daylight to waiting rooms in search of issues which mayormaynotmaterialize.
"Oh yes," says He. "THEY are very happy people."
(Except when he's being a monstrous little shit, Old Mister P2. Come to mine when we've got a new menu item and watch me try to get it down him. If that is happy, then Bozo the Clown got it all wrong and we're living amongst the comedy of Pennywise.)
Saturday comes and we have The Baseline Echo. Two years since discharge from cardiology at Great Ormond Street. Yes, THAT amazing place. Yet here we are having A Baseline Echo. Doctor suggests he may call us in for a follow up and Tiger Mama pounces.
The hell you will. "He was discharged two years ago," says I.
Doctor is calm. Doctor is the very best doctor I have come across in my entire 13-1/2 years living in this country.
Doctor and Tiger Mama smokem Peace Pipe and reach agreement. Daddy sits quietly, watching, listening, asking. Don't poke a stick at this Quiet Man or he will become Tiger Dad and you don't want that tag team in this very quiet hospital this early in the day.
Ever.
Doctor is calm.
Doctor is the very best doctor I have come across.
Heart too, is calm. Heart is fine. As we knew.
Born with two holes in it, today there are none.
No surgery required.
Rukai 1 : Pessimism 0.
Rukai wins.
We leave shaking hands.
We leave shaking heads.
Four appointments. Twelve days. 33% of our time over the better part of a month spent visiting doctors when there is pretty much nothing wrong.
They call it 'health monitoring' but it feels an awful lot like Big Brother.
This is in no way "the life". But this is The Life.
We drop everything, we drive to and fro, we pay, we park. You poke and prod. Rukai thrashes and shouts. Cut it out. Quit poking me. You just weighed and measured me two days ago. Stop shining that goddamn light in my eyes. Get that fucking thing out of my ear. That gel on my chest is cold. I was fine and you are now really pissing me off.
THEY are not always happy.
God damn it, stop suggesting it.
And stop calling my son THEY.
I told the Doctor (because he did drop a 'they' early on in the conversation) that the services were crap where we lived, that those people threw Rukai into a box labeled Down's syndrome and discounted him. So we packed up and moved house to begin again.
"He is our SON. He is our child. He is our world," says I. "He is not THEY."
And this Doctor, he nodded. He smiled and he nodded and he kept scanning for a problem that did not exist. He searched for one acronym and I told him it was the other acronym we were looking for, that the notes were wrong, that it is column B not column A.
And this doctor, he smiled and he nodded and he GETS it.
My goodness, he GETS it. I wish for the world, that they all could GET IT. I explained at length why Tiger Mama pounced initially and he GETS it.
"You just want a normal life. If nothing is wrong, you just want to get on with things," says he.
Thank you. My faith is restored. And so we agree to a suggested check up five years hence - 'suggested' being the operative word, no 'mandatories' here.
Thank you for hearing us.
Thank you for listening to us.
Thank you for understanding us.
I told him where we came from and to where we've gone.
I told him how bad it was there and what we endured.
My words did not ricochet off. They nestled in and had a cuppa.
We turned to go and Rukai turned towards him.
We turned to go and there was a high five.
We turned to go and Rukai reached out. To the Doctor who Reached Out.
Rukai delivered a cuddle.
Rukai is the world's greatest bullshit detector and that cuddle was there for the giving.
To the Doctor who Reached Out.
This is The Life. But we are now very firmly in the driver's seat.
Thank you Doctor.
Four.
Rukai spots a bit of fluff in the carpeting from twenty paces and goes to retrieve it.
"We must monitor his vision. THEIR eyes are commonly not working properly."
A rattle of keys in the front door turns his head. His eyes go wide and fingers point at the arrival of his Daddy. Down the hall, I open the bathroom door. One door is quickly disregarded for the other and he comes charging down the hallway to interrupt me, his curiosity piqued.
"We must monitor his hearing. THEY commonly have hearing loss."
Pediatrician 1 cannot confirm another issue, off to Pediatrician 2. I tell Pediatrician 2 that over the years, we have left off therapists and unnecessary appointments because Rukai is driving his own development. We don't want his default to change from easygoing, chilled, to pressured, overworked.
He's only 3. A three year old should not be overworked. A three year old should play. A three year old should not sacrifice his daylight to waiting rooms in search of issues which mayormaynotmaterialize.
"Oh yes," says He. "THEY are very happy people."
(Except when he's being a monstrous little shit, Old Mister P2. Come to mine when we've got a new menu item and watch me try to get it down him. If that is happy, then Bozo the Clown got it all wrong and we're living amongst the comedy of Pennywise.)
Saturday comes and we have The Baseline Echo. Two years since discharge from cardiology at Great Ormond Street. Yes, THAT amazing place. Yet here we are having A Baseline Echo. Doctor suggests he may call us in for a follow up and Tiger Mama pounces.
The hell you will. "He was discharged two years ago," says I.
Doctor is calm. Doctor is the very best doctor I have come across in my entire 13-1/2 years living in this country.
Doctor and Tiger Mama smokem Peace Pipe and reach agreement. Daddy sits quietly, watching, listening, asking. Don't poke a stick at this Quiet Man or he will become Tiger Dad and you don't want that tag team in this very quiet hospital this early in the day.
Ever.
Doctor is calm.
Doctor is the very best doctor I have come across.
Heart too, is calm. Heart is fine. As we knew.
Born with two holes in it, today there are none.
No surgery required.
Rukai 1 : Pessimism 0.
Rukai wins.
We leave shaking hands.
We leave shaking heads.
Four appointments. Twelve days. 33% of our time over the better part of a month spent visiting doctors when there is pretty much nothing wrong.
They call it 'health monitoring' but it feels an awful lot like Big Brother.
This is in no way "the life". But this is The Life.
We drop everything, we drive to and fro, we pay, we park. You poke and prod. Rukai thrashes and shouts. Cut it out. Quit poking me. You just weighed and measured me two days ago. Stop shining that goddamn light in my eyes. Get that fucking thing out of my ear. That gel on my chest is cold. I was fine and you are now really pissing me off.
THEY are not always happy.
God damn it, stop suggesting it.
And stop calling my son THEY.
I told the Doctor (because he did drop a 'they' early on in the conversation) that the services were crap where we lived, that those people threw Rukai into a box labeled Down's syndrome and discounted him. So we packed up and moved house to begin again.
"He is our SON. He is our child. He is our world," says I. "He is not THEY."
And this Doctor, he nodded. He smiled and he nodded and he kept scanning for a problem that did not exist. He searched for one acronym and I told him it was the other acronym we were looking for, that the notes were wrong, that it is column B not column A.
And this doctor, he smiled and he nodded and he GETS it.
My goodness, he GETS it. I wish for the world, that they all could GET IT. I explained at length why Tiger Mama pounced initially and he GETS it.
"You just want a normal life. If nothing is wrong, you just want to get on with things," says he.
Thank you. My faith is restored. And so we agree to a suggested check up five years hence - 'suggested' being the operative word, no 'mandatories' here.
Thank you for hearing us.
Thank you for listening to us.
Thank you for understanding us.
I told him where we came from and to where we've gone.
I told him how bad it was there and what we endured.
My words did not ricochet off. They nestled in and had a cuppa.
We turned to go and Rukai turned towards him.
We turned to go and there was a high five.
We turned to go and Rukai reached out. To the Doctor who Reached Out.
Rukai delivered a cuddle.
Rukai is the world's greatest bullshit detector and that cuddle was there for the giving.
To the Doctor who Reached Out.
This is The Life. But we are now very firmly in the driver's seat.
Thank you Doctor.
Tuesday 31 March 2015
Out like a lion.
Bluster and gust. Rain and splutter. Like me, this week has done nothing in whisper.
They say March arrives as lion and tiptoes away as lamb. Not in this life, friend, not in this one.
In this life, there are times I find myself with no words. Speechless at the wonder of what I've seen, felt, realized, done. There are times I have no words, and then they come, and they bubble and froth and boil over and rush forward as tsunami and then I am free of them, I am released. Usually this release is a black and oily thing. This is a why us? and a how come? and an oh no! and a my God! And there is a hugging of knees and a rocking and a wailing and a running away and a digging myself out, and a covering up my head and wishing the day away.
But oh no. Not today.
Today the wave is Joy.
Today the wave is Pride.
Today the wave is Progress.
Today the wave is I am. I can. I will.
Today the wave is I DID.
Today the wave is steps. Steps to. And steps fro. Without support, steps. With a laugh and a grin so wide it could embrace the world. With salty tears. With a room full of people who have seen it a million times, yet still gone silent, turned, focused on one little boy.
Walking.
Red eyes. Lumped throats. Beat-skipping hearts.
Today the wave is love and friendship. TRUE friendship. Fist pumping the air friendship. Thankheavensyougotherewethoughtmaybeyouweren'tcoming friendship. Not contrived, organized, hoped for, but TRUE. Tomorrow friendship.
Last June we moved to a new place in the hopes that the wave would follow, would sweep away all the sticky sorrow that held us all back, would free us from the past. Last June we came here to find our tomorrow. Last June was the proverbial first day of the rest of our lives. The days that have piled on top of each other like sand in a castle that goes so high it blots the sunset. The wet kind of sand that sticks and does not falter. The days that tower. The days that lay a foundation. That castle fit for a king.
Of his own destiny.
No, son. No. No one here will deny you this as long as I have your back. And I have your back. I have never had anything like I have your back.
We are sailing. All together, sailing.
Because there really ARE no words for the place we are. In every aspect of life, this place has delivered what we need in bucket loads. Blustered and gusted. Cleared the cobwebs. Parted the clouds. Painted us blue skies again.
Today the wind has toppled bins.
Today the wind has lit up the motion sensored light onandoffandonandoff like a panting phantom.
Today the wind has blown away the guesswork and the statistical suspicion.
Today the wind has erased the 'he will need..., he will require..., he will not...'
Because today he WALKED. A few steps only but he WALKED.
Unsupported by a walker.
Unsupported by his mother's hands.
Unsupported by his father's hands.
Unsupported by his nursery key worker's hands.
Unsupported by a physio.
Unsupported by the naysayers.
Unsupported by the box-tickers.
Today he walked. And tomorrow he will keep walking.
He will bluster and gust and fly and roar. And he will keep walking.
On his terms, in his time, he will keep walking.
They say March arrives as lion and tiptoes away as lamb. Not in this life, friend, not in this one.
In this life, there are times I find myself with no words. Speechless at the wonder of what I've seen, felt, realized, done. There are times I have no words, and then they come, and they bubble and froth and boil over and rush forward as tsunami and then I am free of them, I am released. Usually this release is a black and oily thing. This is a why us? and a how come? and an oh no! and a my God! And there is a hugging of knees and a rocking and a wailing and a running away and a digging myself out, and a covering up my head and wishing the day away.
But oh no. Not today.
Today the wave is Joy.
Today the wave is Pride.
Today the wave is Progress.
Today the wave is I am. I can. I will.
Today the wave is I DID.
Today the wave is steps. Steps to. And steps fro. Without support, steps. With a laugh and a grin so wide it could embrace the world. With salty tears. With a room full of people who have seen it a million times, yet still gone silent, turned, focused on one little boy.
Walking.
Red eyes. Lumped throats. Beat-skipping hearts.
Today the wave is love and friendship. TRUE friendship. Fist pumping the air friendship. Thankheavensyougotherewethoughtmaybeyouweren'tcoming friendship. Not contrived, organized, hoped for, but TRUE. Tomorrow friendship.
Last June we moved to a new place in the hopes that the wave would follow, would sweep away all the sticky sorrow that held us all back, would free us from the past. Last June we came here to find our tomorrow. Last June was the proverbial first day of the rest of our lives. The days that have piled on top of each other like sand in a castle that goes so high it blots the sunset. The wet kind of sand that sticks and does not falter. The days that tower. The days that lay a foundation. That castle fit for a king.
Of his own destiny.
No, son. No. No one here will deny you this as long as I have your back. And I have your back. I have never had anything like I have your back.
We are sailing. All together, sailing.
Because there really ARE no words for the place we are. In every aspect of life, this place has delivered what we need in bucket loads. Blustered and gusted. Cleared the cobwebs. Parted the clouds. Painted us blue skies again.
Today the wind has toppled bins.
Today the wind has lit up the motion sensored light onandoffandonandoff like a panting phantom.
Today the wind has blown away the guesswork and the statistical suspicion.
Today the wind has erased the 'he will need..., he will require..., he will not...'
Because today he WALKED. A few steps only but he WALKED.
Unsupported by a walker.
Unsupported by his mother's hands.
Unsupported by his father's hands.
Unsupported by his nursery key worker's hands.
Unsupported by a physio.
Unsupported by the naysayers.
Unsupported by the box-tickers.
Today he walked. And tomorrow he will keep walking.
He will bluster and gust and fly and roar. And he will keep walking.
On his terms, in his time, he will keep walking.
Sunday 22 March 2015
On this Day of Days.
I posted this on my Facebook page yesterday and the warmth I was given in return from my wonderful friends astonished me and has lifted me like nothing else. My opinion may not be popular with everyone but it is what I believe, and belief can move mountains.
Just ask Rukai.
_________________________________________________________________
Today is World Down Syndrome Day. 3/21, which represents those magical 3 copies of the 21st chromosome which has made our lives slightly more complicated than the average bear. But worse? Are you joking? Thatwouldbeabigfatno.
Today I'm supposed to sing about inclusion, and provide people with information. To rally up awareness and talk about wearing odd socks as a means to open the conversation. This thing they call 'lots of socks' can be Googled. I'm not going to elaborate here.
What I will say is piffle and balderdash on the odd socks. I think the whole odd sock thing is flipping ridiculous. Although it is not the purpose behind it, I just won't pursue an avenue which allows people to compare Rukai to an odd sock. That the Shiny People don't comprehend this, I do not see. But I'm not shiny, I'm Chicago. I'm 43. I'm a realist. I'm not naive enough to hope people don't jump to negative knee jerk conclusions on the sock thing. They will. So we'll stick to our two matching socks around here.
So that said, on this Day of Days I have two things to 'sing' about...
I am most looking forward to drumming up awareness of the DS association here in the UK next weekend in the Vision Wild Run - getting muddy for my buddy. Not asking a soul for sponsorship. Just for friendship. Just for the knowledge that you all maybe have a different perspective about DS from all my harping on. That you all know my son is the bees knees and I wouldn't trade him for all the pizza in Chicago. That people with DS are people. They are not DS. That maybe you'd tell someone off if you heard them calling a person 'a Down Syndrome'. If you ever get to that place and have that chance, let me know how it went down. I will buy you dinner and think of you as a hero til my dying day.
That is how important it all is to me. That is why I harp on about it. That is why there is a hide button on FB. But if you're still with me, you are still with Rukai and that says more than a bunch of odd socks.
If you don't already know, I will share with you the fact that DS has a gargantuanly vast spectrum of affectation and lo and behold Rukai is holding his own. That magic number three is still not presenting insurmountable challenges for us in our lives.
But you know what is?
The terrible twos. Followed by the screamy threes. Toddlerhood trumps DS in this house. Lays it flat or sends it screaming. Toddlerhood. Just like you did it. Just like I did it.
We all bleed red no matter how many chromosomes float around in that blood. And on this Day of Days that is all I want you to be aware of.
Much love from us all, my friends xxx
MSN 21 March 2015
Just ask Rukai.
_________________________________________________________________
Today is World Down Syndrome Day. 3/21, which represents those magical 3 copies of the 21st chromosome which has made our lives slightly more complicated than the average bear. But worse? Are you joking? Thatwouldbeabigfatno.
Today I'm supposed to sing about inclusion, and provide people with information. To rally up awareness and talk about wearing odd socks as a means to open the conversation. This thing they call 'lots of socks' can be Googled. I'm not going to elaborate here.
What I will say is piffle and balderdash on the odd socks. I think the whole odd sock thing is flipping ridiculous. Although it is not the purpose behind it, I just won't pursue an avenue which allows people to compare Rukai to an odd sock. That the Shiny People don't comprehend this, I do not see. But I'm not shiny, I'm Chicago. I'm 43. I'm a realist. I'm not naive enough to hope people don't jump to negative knee jerk conclusions on the sock thing. They will. So we'll stick to our two matching socks around here.
So that said, on this Day of Days I have two things to 'sing' about...
I am most looking forward to drumming up awareness of the DS association here in the UK next weekend in the Vision Wild Run - getting muddy for my buddy. Not asking a soul for sponsorship. Just for friendship. Just for the knowledge that you all maybe have a different perspective about DS from all my harping on. That you all know my son is the bees knees and I wouldn't trade him for all the pizza in Chicago. That people with DS are people. They are not DS. That maybe you'd tell someone off if you heard them calling a person 'a Down Syndrome'. If you ever get to that place and have that chance, let me know how it went down. I will buy you dinner and think of you as a hero til my dying day.
That is how important it all is to me. That is why I harp on about it. That is why there is a hide button on FB. But if you're still with me, you are still with Rukai and that says more than a bunch of odd socks.
If you don't already know, I will share with you the fact that DS has a gargantuanly vast spectrum of affectation and lo and behold Rukai is holding his own. That magic number three is still not presenting insurmountable challenges for us in our lives.
But you know what is?
The terrible twos. Followed by the screamy threes. Toddlerhood trumps DS in this house. Lays it flat or sends it screaming. Toddlerhood. Just like you did it. Just like I did it.
We all bleed red no matter how many chromosomes float around in that blood. And on this Day of Days that is all I want you to be aware of.
Much love from us all, my friends xxx
MSN 21 March 2015
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