Archive for the ‘tanner’ Category

The Invisible Boy

January 21, 2009

He wants to be invisible, she tells me. When we’re out he clings to me and turns his face into my side and it’s like he wants the the whole world to look in the other direction, away from him and his weakness and his wheelchair.

She sighs. Your sister told me, when they got back from DisneyWorld, that he was unhappy in the crowds, that he was embarrassed when they couldn’t get him onto the rides, that he just wanted to hang behind everyone else and hide.

He knows, now. My mother chokes on her words. He sees himself. He sees what he thinks everyone else sees. And he hates it.

I have no response. We whisper our I love yous and hang up the phone. I have no response. I just cry.

When Tanner was diagnosed with the condition that will kill him, he was four years old. He was a boisterous preschooler with a big smile and a habit of barreling at you at top speed and knocking you down, the better to wrap his little arms around your neck and wet your cheeks with slobbery kisses. His gait was a little funny – he walked on his toes, like a wannabe ballet dancer, and lost his balance, a little, sometimes, going up stairs. But nothing that made him seem anything other than the adorable cyclone of a four-year old that he was.

But then it became clear that he wasn’t walking as well as other kids his age. A caregiver commented on the unusual shape of his calves. He continued walking on his toes. A physiotherapist was consulted. Then a doctor. Then the geneticists. And then, one evening, I got a phone call from my mother, telling me that they’d finally gotten the results of the tests and that Tanner had something called Duchenne’s Muscular Dystrophy. What’s that? I asked. And then my mom burst into tears, and said something incoherent about muscles and dying and I felt a chill roll down my back, I felt it run like a stream of cold water from the base of my skull and down along my spine and, with the phone tucked between my ear and my shoulder and my mother’s cries echoing across the wire, I brought my fingers to my keyboard and Googled Muscular Dystrophy, Duchennes and the chill turned to ice. He would die. His muscles would disintegrate and he would die.

No cure. No hope.

For the first year, it was easy to wrap ourselves in platitudes like live for the moment and seize the day and rejoice in the time that you have because Tanner didn’t change much, not at first. His walking got a little more awkward, but he was still a rough and tumble force of a little boy who loved nothing more than fierce hugs and cuddle-wrestling. To anyone who didn’t know him, he was just another ordinary child. No clock ticking over his head, no enemy within. Just a boy. But then he started undergoing steroid treatments, which affected his behaviour, and his physical condition deteriorated and continued deteroriating and word started getting out among neighbours and school-peers that he was sick. Disabled, obviously, but not only that: disabled, and marked for death. Some children started teasing him, and he began to understand.

That was over two years ago. That was over two years ago, and Tanner has since learned – we have all learned – to cope with the reality of his illness. That is, we think that we have, until we see Tanner recoil in embarassment from his wheelchair, or refuse to make eye contact with other children. Or tuck his head against his mother’s thigh at DisneyWorld and insist that, no, he doesn’t want to see if they can accommodate him on that ride, or this one.

This, this is a terrible heartbreak. We imagine, we believe, that all sick or disabled (no, he is not differently-abled. He is 8 years old and he can neither run nor play sport with other children. He experiences his condition as a disability, something that prevents him from doing that which he most wants to do) children bear their conditions nobly, and with good spirits. We watch the TV shows and the movies and our hearts are lifted by these brave little souls who carry their fates with dignity. We forget, however, that these are mostly fictions, that however noble are our beloved broken children, they are still children and they hurt like children and they fear like children and they cry like children and is there anything worse, really, for a child, than to be constrained in a chair – embarassed, ashamed – at the happiest place on earth while all the other children race and play with abandon?

Tanner wanted to hide. He wanted to not be seen. He wanted his weakness, his powerlessness, his sickness, his bound-in-a-chairness to be wrapped in a cloak of invisibility. He wanted – in the middle of all of the joy and all of the celebration and all of the hope (and yes, Disney does these things so well, with its spontaneous choruses of dreams really do come true, with its sudden eruptions of dance and sparkles, with its ever-present proclamations of joy, you can almost taste the hope, the magic) – to disappear.

And I don’t even have words to describe the hundred million ways that my heart breaks – that it shatters – to know this. I don’t have the words to describe the force of my wish that this just weren’t true, that this would all just go away, that I could make the disease that is killing him not only invisible, but non-existent. That I could take away everything that makes Tanner want to hide and to bring him out into the sun and say, with conviction, see? there is no darkness here. There is nothing to be afraid of, there is no reason to hide.

There’s a small part of me that wishes, sometimes, darkly, that we could have four-year old Tanner back; that we could go back to those days before the diagnosis when he was a wee bundle of four-year old fury, squeezing us with his round little arms, pummelling us with his joy, living a life of unrestrained happiness, reaching toward a limitless sky. But to have that Tanner back would be turn our backs on the Tanner who lives and loves and pummels us – with the sheer force of his heart – now. And that Tanner – this Tanner – is extraordinary, amazing, beautiful, brave. So, so brave, so, so beautiful. So deserving of being seen. Seen, and included, and loved.

It is not, however, my place to thrust him into the spotlight, to force him to bravely face the crowds and share himself. I can only tell his story, and hope that it gives you – the known and unknown yous who follow his story – some sense of the miracle that he is, this brave little boy who carries this terrible, terrible burden and who nevertheless goes forward, shyly, into the world, hoping to share in its joy. And if it reminds you to make an effort to really see somebody, anybody, who is hiding in a literal or figurative corner, to go over and take their hand and make the effort to let them know that you see them and that you think they are wonderful… well, then, that will have been no small thing.

Do it for Tanner.

Motorola – who sent me on my trip to Disneyworld (which unfortunately couldn’t take place at the same time as Tanner’s trip; one of his biggest wishes has been to someday have a holiday with his cousins, but this is tremendously difficult to arrange, and we were disappointed to miss the opportunity) – has offered me a Motorola Motozine Zn5 camera phone (read about it here; it is awesome) to give away. Which I’m going to do, through a random draw, BUT: in order to be eligible to win, you need to state, in your comment, what you will do to pay your good fortune forward. It can be anything – shovelling the walk of the old lady who lives across the street, or sitting down and having a talk with your kids about being inclusive of kids – like Tanner – who seem different, or making a donation to a charity of your choice (it’ll be honor-system principle whether you follow up or not, but I really hope that you do.) You have until Sunday, midnight.

On my end – because I’m on a one-woman mission to turn every giveaway that hits the internets into a pay-it-forward giveaway – I’m going to make another donation, in the name of the winner, to the organization (Parent Project Muscular Dystrophy) that my sister ran to raise funds for. (If you haven’t already made a donation, please think about doing so. I know that you have other causes to support, and I’ll understand if you can’t, but please, think about it, and maybe pass the request along.) And then I’m going to send a camera to Tanner, so that even if he feels most comfortable on the sidelines, he can share with us what he sees. So that we might, perhaps, see the world from his side, and look there more often.

(Congratulations to Catherine from PinkAsparagus, who won the draw for the Motozine camera phone! Catherine, please e-mail me so that I can arrange to get the phone to you.)

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Clockwatching

January 6, 2009

Last night, I curled up in bed with my little girl. She lay her head against my arm and gripped my fingers with her tiny hand and whispered, I want you to stay here, Mommy.

Yes, I said. I want you to stay here, too.

And then I rested my cheek against the crown of her head and closed my eyes and inhaled the sweet, soapy smell of baby shampoo, felt the silk of her hair, heard the whisper of her breath and I thought, I want you to stay here, like this, always, curled against me, warm, safe. And I thought, I want you to stay here, like this, for years and years to come, until the days when you and I no longer fit together in this wee bed, when you are grown and I am old and your arms are the stronger. When we will still find comfort in each other. When you will still be my baby, only grown.

I thought these things, and I looked up at the clock atop her dresser and watched as the minute hand took one deliberate click forward. I looked up at the clock and I wondered, how would it feel if I were counting these minutes? These hours? These days?

It is not possible to hold a child too close, or for too long.

A family lost a child this week. Maybe it was the famous family, the one that we are all reading about it and talking about. Or perhaps it was another family, a family unknown to us, a family in Burma or Kinshasa or the Gaza Strip or Oshawa, Ontario or Saguenay, Quebec. Perhaps it was many families; perhaps it was many children. We lose count; we stop paying attention. We stop paying attention, unless the child is lost to someone that we know, someone that we know of. Then we remember. Every hour of every day, somewhere, someone suffers what we fear most. What I fear most.

My family is losing a child. Our loss is not sudden; it will not be unexpected. It’s a slow loss, but an inevitable loss; the hands of the clock tick forward slowly, deliberately, inexorably. We count on those hands ticking slowly; we measure their movements carefully, reassuring ourselves that the pace holds steady, that there is no leap forward, that this particular clock never advances an unnecessary hour, that our days hold ample daylight. It’s a slow loss, but an inevitable one.

We are better off, of course, for the trickling pace of this loss. We have many days, many hours, with this child. Not near as many as we would like, but still: we have time to spend and cherish, time to postpone our goodbyes and to pretend that their place on the horizon will hold its distance. My sister can wrap her body around Tanner’s and feel the beat of his heart and the warmth of his breath; she can brush her hand across his forehead and whisper in his ear and assert her love for him in the now and know, as surely as his hand tightens around hers, that he hears her, that he knows. But the clock ticks over her head – over his – and she counts these hours, these minutes, these seconds. Every movement of the minute-hand is a movement lost, a moment lost, one minute less in a cherished life that is measured by the clock.

My mother called on Christmas Eve, a thick edge to her voice, the edge of a third glass of wine, the edge of regret seeking reassurance. I miss you so much, she said. I miss Emilia, and Jasper. I’ll bet Emilia’s so excited for Santa. She laughed, uncertainly. I wish we could be together. I wish I could be there, I would move there in a heartbeat, but I can’t be there, because I need to be here, with Tanner. A pause. He’s really gone downhill. He’s declining really quickly. He’s not going to last more than another few years, maybe. Another pause; the clink of a glass. After he’s gone…

– I know.

After he’s gone…

– I know.

After Tanner is gone, time will stop, and then it will start again, without him. I don’t like thinking about this. I was upset with my mother for reminding me of this on a night that I wanted to spend in thrall to the optimism of Christmas – fear not, for behold: I bring you good tidings of great joy, which shall be to all people – and to the sweet prospect of waking up to tiny pajamaed children filled with glee. I wanted my own now, free of sadness, free of the prospect of death, free of fear of that black hole of timelessness opening up and swallowing us all. I wanted to not walk through the valley of the shadow of death. I resented my mother for pulling me alongside her in her stroll. And that was wrong.

It was wrong because I am so, so fortunate to be able live my life with my own children, free of the clock, free of the incessant clang of the tolling bell, free of the the hourglass, the blind sands – free, at least, in my ignorance of, my deafness to, the tick, the clang, the passage of the sands that mark the time that passes for each of us. It was wrong because I am so fortunate, and I need to remain mindful of, and grateful for, that fortune. I can hold my daughter or my son and not think, here passes one more moment, here we move one step closer to death, here is one less embrace that we will share. I have a life with them, a now with them, that is free of visible shadows. I am blessed. And I am insufficiently appreciative of this blessing.

I pay little mind to the time that passes with my own children, apart from vague reflections upon the pace of their growth and the fleeting beauty of their babyhood. I mark Tanner’s time, I count it on my fingers and toes, I spend hours, awake at night, calculating how many more visits we have, how we shall spend those visits, how best we might use our time, how we might take time and wrest timelessness from it, in the form of memory. But I forget to mark the rest of time; I forget that I do not have infinite stores of time to spend with my children; I forget that the bell tolls as much for us as it does for Tanner, the only difference being that we do not know when its tolling will stop.

I do not pause often enough; I do not often enough stop and hold my children, just for the sake of holding on. I do not take as much time as I should to just hold them and listen to their hearts beat and feel their breath upon my cheek and their hands warm within my own and hear the tick of the clock – feel the tick of the clock – and be grateful for every. single. second. In ignoring time, I am doomed to lose it. I need to take time, take measure of time, give thanks for time, for whatever stocks of time that I am blessed to have. With Tanner, with Jasper, with Emilia, with all whom I love and with whom I wish to have more time, always more time.

Hug your children today; hug them, and let time stop, and then, when it starts again? Thank the heavens for it.

*******

My sister, Chrissie, will be running, this weekend, in a marathon to raise money for Duchenne’s research. There’s no cure for Duchenne’s, but there’s always hope, and Chrissie is running, as always, for this hope. With my words, I can cheer her on, and I can ask others to cheer, and to help by cheering and to cheer by helping.

You can donate in Tanner’s name HERE. It probably won’t change the ending to this story, but it will help the narrative maintain a recurring theme of hope. And that, right now, is all.

Sings The Tune Without The Words

October 22, 2008

It’s been four years since my nephew, Tanner, was diagnosed with the condition that will kill him. During that time – which moved slowly at first, the disease not seeming to have taken hold in his little body, until he began growing faster, and it began its ceaseless attack on his muscles, crippling them and consuming them as the rest of his body grew – I never once saw my sister, his mother, cry. I knew that she did cry, of course, when the children weren’t looking, when she didn’t need to maintain a front of fierce composure, but her tears never spilled where anyone could see them. She was scrupulous about that. Tanner needed her to be strong, and so she was strong.

I wasn’t prepared, then, when she broke down in front of me last month, after we’d spent a week at the bedside of her eldest son, Zachary, as he lay hospitalized – tubed and wired and monitored against the infection that was attacking his spinal cord and nervous system – a week that we’d spent clutching hands and holding each other and her patting my back whenever my eyes welled up with tears: it’s okay, Cath, she’d whisper. Here, let me take Jasper if you need to leave the room. She hadn’t cried – although I felt her grief like an electric current, like a surge of energy that lashed out in so many broken wires, snapping and hissing, every time the doctors refused to give a prognosis, every time his father, her ex-husband, called and said that he couldn’t visit until very late, every time he flinched from pain, every time we left his room – she hadn’t cried, until we were many miles away from his bedside, and when the moment came, it surprised me.

I’d accompanied her to her doctor, to get some forms signed that would allow her to take yet another compassionate leave from work, so that she could attend to the business of watching over one sick son – too many miles from home, at the hospital for sick children – while making sure that the other son, the dying son, and the daughter, were cared for. He asked her how she was holding up, she told me as she walked out of his office. He asked her, and she burst into tears. The tears were still streaming down her face.

We were silent as we collapsed Jasper’s stroller and loaded it into the minivan, in the back, where Tanner’s wheelchair sits on the lift that was specially installed so that Chrissie could drive him around, so that he could go to school and to swimming and on errands with his mom, just like a regular boy. She didn’t say another word until we were in the front seats, her keys in the ignition. I feel like I’ve been raped, she said, the tears still streaming. I feel like I’ve been raped and beaten. It hurts that bad. She put her head on the steering wheel.

I told the doctor, sitting at Zach’s bedside, watching him, worrying that he would die, it was too much hurt, she said, not lifting her head. I told him I feel like that this was a dress rehearsal, like I was practicing for sitting by Tanner when the time comes, except that I won’t be hoping he won’t die, like with Zach, I’ll be knowing that he will die, knowing that he won’t leave the hospital, ever.

Her hands gripped the steering wheel, her knuckles white, her head still down as her body shuddered, sobbing. I put my hand on her heaving back; I stroked her long hair. I didn’t say anything. I didn’t have any words for her.

I didn’t have any words for her, because there are no words. There’s no lesson to be pulled from her experience, no philosophy to apply, no narrative that will make things better. This story already has its narrative, and although it’s tempting to impose philosophies and draw lessons – how precious life is, how precious love, how fragile the former, how enduring the latter – these are meaningless against the impending conclusion of this story, the loss that looms not like storm clouds but like a great, gaping black maw, a black hole of nothingness. There is only the inevitable conclusion of this story, and its finality. If it holds a poetry it is a wordless poetry, a song without lyrics that strums the distance between love and loss, light and dark. If it holds this poetry, it is well beyond my grasp to seize it. I can only witness, mute.

I have no words. I have nothing to give to my sister, only love, which is everything, I know, but still – it’s nothing in the face of so much pain. And so we can only march, together, bound by love, bound by pain, struggling with these and against these bonds to wring as much love-beauty-joy from the journey, while it lasts.

I can do one thing with my words, though: I can ask others for help. Chrissie will be running, in a few months, in a marathon to raise money for Duchenne’s research. There’s no cure for Duchenne’s, but there’s always hope, and Chrissie is running, as always, for this hope. With my words, I can cheer her on, and I can ask others to cheer, and to help by cheering and to cheer by helping.

You can donate in Tanner’s name here. It probably won’t change the ending to this story, but it will help the narrative maintain a recurring theme of hope. And that, right now, is all.

(I’m closing comments. Please use whatever energy you might have spent sending your love and good wishes and use it to pass this story along, or, maybe, to click the link and give a dollar or two in Tanner’s name. Thank you, as always. Thank you thank you thank you.)

A Portrait Of A Mother As Hero

April 26, 2008

Something – someone – that I haven’t written about it in a long time: my nephew, Tanner. He’s dying. He has an aggressive form of muscular dystrophy – Duchenne’s muscular dystrophy – and it’s become painfully clear over the past few months that his is a more aggressive form of an already aggressive terminal disorder, which is why I haven’t written about it in so long. It’s too painful. He can no longer walk, at all. The muscles in his legs have deteriorated to the point where they are no longer able to carry him forward. His lungs and his heart are going to fail him in this way, too, but there’s no wheelchair for the lungs or the heart.

He’s only eight years old. This is all happening much too quickly. For us, for him.

His mother is my sister, my only sibling. If you’d asked me, say, twenty years ago whether I’d admire her as grown-up, I would have stuck out my tongue at you and called you stupid. I would have said no, because she’s a stupid stupid-head and she took my favorite top and she’s going to be a stupid-head forever. Or something like that. We loved each other, but we rolled like that.

My sister, formerly-known-as-stupid-head, is now the mother of three children, one of which a dying child, and I don’t know how she does it. Like, head-shaking, utterly-baffled, completely-beyond-me, oh-GOD-pass-me-another-drink don’t know how she does it. I don’t think that she knows, either. But she does it, somehow. She keeps on doing it, because it’s the only choice she has. She can’t give up. She has to keep going, for Tanner and his brother and his sister, and for herself.

She runs. She runs faster and harder and longer than anyone I know. She keeps running long after others would have stopped, long after other legs would have buckled, long after other hearts would have near burst. She runs for Tanner, to raise awareness of his condition, to raise money for research, to raise his name upon a sweaty t-shirt so that the world can see that there’s a kid called Tanner out there and he’s special and he’s loved and please never forget kids like Tanner.

She runs because Tanner can’t. She runs because he’s running out of time, and because, in the face of being able to doing nothing to stop or slow the passage of that time, it helps, a little, to run headlong into the wind and speed through time and make time her bitch, if only for the hours and minutes it takes to run a marathon. To feel her own legs weaken and her own heart and lungs strain to bursting in their confrontation with time and speed and the inexorable spinning of the world toward destinies she has not chosen.

She is, as they say, just a mom. But she’s the most extraordinary mom, in my eyes, because fate keeps pummeling her heart and she keeps saying fuck you fate and then keeps on running and running and running and running for her boy and for herself and for her family and for anyone who ever felt overwhelmed by life and love and the all-too-swift passage of time.

And that persistence, that determination, against all odds – whether it’s expressed in running or writing or just hanging-on-by-the-fingernails coping – that’s motherhood at its most heroic. That’s heart.

And I am in awe of it.

My sister, finishing the Boston Marathon this week. A portrait (in miniature) of awesomeness.

********

I’m closing comments for this post because a) my heart is a little raw after writing it and I’d like to just let it sit for a while, b) because I’d rather you take that extra second to click over here or here and learn a little about MD, or maybe, if you’re so inclined, make a donation.

(Posted as part of PBN‘s Portraits of Mom Blog Blast)