Tag Archives: duchenne

Little minnow in the sea

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It’s a strange place to be, to not be able to find words when words are what you making your living from. But I’ve been trying for over a month now to find the words to describe what I’m feeling, or how it feels to be raising a child with a rare and fatal condition. But the words won’t come and I feel like a minnow in a very big, very black sea, opening and closing my mouth in the darkness and unable to get a single sound out.

It was my wedding anniversary the day we were in hospital for Hermes’ six month follow up with his consultant in the UK, because Duchenne has no sense of timing. As the appointment started, the physiotherapist asked us if we’d noticed any decline in our child. No, my husband and I both answered. “He’s been doing great!”

But when the assessment started, sitting in the frame of the physiotherapist’s room, I could tell that this time around it was a lot harder for him. I became quiet. We both did. When it was over, I dreaded what was coming as the physiotherapist tallied up his score. Still, I don’t know what it is about hope that lets you fool yourself the way I do sometimes. I had seen with my own eyes that my son hadn’t done as well as the last time, yet I kept thinking “It’ll be fine, this is just a blip!”

Then the verdict. Six points down from the previous visit. I was stunned into a cold, creeping silence. We nodded. We left. I kept thinking “But it’s my wedding anniversary today…” as if that would make any difference. Because I know full well that it doesn’t.

He’s only six. My child is six, and at six he has reached and passed the strongest he’ll ever be in his life, and now he’s slowly rolling downhill. Piece by piece, he will lose more of his mobility. My child is six, and I will not get to sit in that doctor’s office and be told that he is doing better, getting stronger, jumping, running, riding a bicycle. Better and better each time, the way it’s meant to be. Because it just won’t happen.

My child is six, and at six he has two files full of medical documents and I hate the sight of them sometimes.

So far, I’ve done as well as anyone can with dealing with each part of the challenge that is life with Duchenne. But realising that the reality of this condition is now setting in, that our trips to the park are numbered, that when he says “Let’s play catch!” I better get up and do it no matter how tired I am because that too will eventually go, all of this has been a hurdle I just can’t seem to get past.

And that’s when I realised that there are two types of panic. There’s the type while explodes inside you and has an immediate effect. Then there’s the other type that I became acquainted with just over a month ago. The slow, horrible, sticky, stringy panic which wraps its cold tendrils around you and builds in tiny, thin layers. It wheedles its way into your brain and catches you up short, so that when you’re laughing with friends, the unwelcome thought flashes across your brain that your child’s body is falling apart.

This new type of panic settled itself like a spiky little ball in the pit of my stomach and stayed there, so that for around ten days I struggled to eat. For two of those, I lived on just tea and toast, because anything else hurt too much. Weight dropped off me, and I thought of those stupid banner ads that promise the one weird trick that makes your fat melt away. I think I found it, guys! It’s having a sick child that you can’t make better.

I stopped sleeping because my brain decided it didn’t need it any more. When I slept, I saw strange, convoluted dreams of car crashes, sea demons and my children falling like dolls from roller coasters while I watched, screaming.

The theme was always the same: I watched as my children were hurt or frightened, and I couldn’t do anything but see it all unfold.

So why am I writing this? Because when the spiky ball of slow-burning panic settled in my stomach, I felt the need to talk. I wanted to tell everyone, random people on the street, and I wanted to be angry. I wanted to say “Don’t tell me this will be fine, because I know already that it won’t.”

But the words refused to come. And so I smiled and nodded and said that everything was fine even though it wasn’t.

The timing was so bad it was almost poetic. My youngest sister got married a day after the hospital appointment. Why spoil the big day? Why spoil the post-marriage joy? Then summer rolled in. Why spoil everyone’s summer break? Did I really want to message a friend sitting on a beach and say I need to talk, I don’t know what to do right now?

And so I sat on it and let it burn me slowly. I wrote this post to see if I could find the words, because I know words, I love words, and for them to evade me like this in every way makes me feel like I lost a piece of myself.

I feel scared, because until now I thought I was doing well with a positive attitude, but now I don’t know where the line between staying positive or kidding myself lies. Or, even worse, kidding my child. “My life is terrible!” he said during a recent tantrum, and I felt my insides crumble a little. I know it’s not to do with this disease, but one day, it might be. I know that the future is paved with bad appointments like the one we just had. From here onwards comes a slow dismantling of my child’s beautiful little body, and I hate this disease for doing that. I hate it for taking so much from him.

The rows and rows of brightly coloured treats that he can’t have because he’s on steroids and can’t have sugar any more – when did childhood become so full of sugar? And as a lifelong sugar addict, I abruptly lost interest in sweet treats since my child couldn’t have them any more.

I remembered myself on the highway in the back of a friend’s car on a trip to France, eating three cream cakes in a row because I wanted them immediately and couldn’t wait, or pace myself. It was well before I got married or had children, another lifetime. I remember the eclair, the pain au chocolat, some other tart with strawberries and cream.

The passion with which I ate them and the pleasure they gave me feel as if they are a scene from a movie I once watched and not a memory from my own life, a time when sweet treats were so normal. Now I scan the pastel rectangles of ice cream flavours looking for sugar-free options and all I see in the swirls of caramel and chocolate chips are the dirty trick that life played on me. It just doesn’t taste good any more.  

And I panic, because I wish I had someone to blame, something to shake on sleepless nights and say “You’re not taking him! He’s mine! I knew his soul before he even came to me, I saw him in my dreams before he even existed! I heard his heart before anyone else did. Stay away from my child, he is mine!”

I know that Duchenne isn’t the end of the world. I know someone somewhere wishes desperately that they were in my shoes. And six weeks on, I am starting to feel better. I’m eating more, though sleep sometimes still won’t come. But I know that that will eventually get better as well and build me up until I’m ready for the next hurdle.

I won’t stop, because I can’t stop. I will keep on being positive, because the fear that my positivity is denial is just a fear. And perhaps a little bit of denial about the long term is what keeps me from losing it altogether.

Tomorrow is World Duchenne Awareness day. Around the world, we’ll be marking this day to celebrate our children and show them that they are not alone. The road is a long one, and I don’t know where it leads. But I know that this disease is not taking away words from me. I will find a way to not let it. I will find a way to talk.

And it is not getting my child without a fight.

With thanks to Google this year for donating their time to create this 3D mini documentary, which features my son and a snapshot of our daily life. If you’ve always wondered what my pyjamas look like, take a look here.

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World Duchenne Awareness Day

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Today is the first World Duchenne Awareness day, held on 7 September (7/9) for the 79 exons that make up the dystrophin gene, and I thought I would share a little of what it’s like to have this disease in your life.

My son Hermes is now 3 and a half. Just this week gone, he started being able to hop. This was a big deal for us as a family. We have taken pictures and videos, sent emails and text messages to friends and family to mark it. For Hermes, his clumsy little hop is a huge achievement. Having DMD means he’s not able to do the ordinary little things that other three year olds are able to. If we hadn’t had his diagnosis the way we did when he was just 13 months old, around this time is when I would have started to get suspicious that something wasn’t right. Why can’t he run like other kids, why can’t he bound up and down stairs like the other kids, why is he getting tired so fast.

So what’s it like living with DMD? I can only tell you my perspective as a parent until Hermes is old enough to share his own story.

Duchenne is a complex disease, and at the same time very simple. My child’s muscles don’t work in the same way as other people’s. Instead of springing and stretching with every movement, they rip and tear. His little body looks like he has been at the gym all day when we’re at the beach. His thighs and calves bulge and are rock hard – bodybuilders would kill for his physique. I look at his body, and I feel angry. It’s not right. A 3 year shouldn’t look like that. When nature plays her dirty tricks, she really does not mess around.

Hermes gets tired quickly, so I have a double pushchair to take him and his brother out and about. I shrug off the comments from well-meaning old ladies “A big boy like you sitting in a pushchair? You should be walking!” When he makes new friends, I tell their parents outright about his condition. Sometimes I am too blunt. I would rather the people that find it too difficult to back away now than for Hermes to get fond of their child and for them to then disappear.

Duchenne in your life means watching your child all the time for signs that the deterioration has set in, celebrating his successes and trying to ignore the little voice in the background saying “Sure, he can do that now. But for how long?” It’s weeks and weeks of anxiety and sleepless nights building up to consultant and cardiologist appointments, gritting your teeth, wondering to yourself Will this be it? Will this be the appointment where we start to hear the bad news? Because no matter what you do, there is not a damn thing that is going to stop that bad news from coming one day. One day it will all start. The steroids are not far away, and I will have to watch the beautiful, delicate features of my child’s face melt away into the moon face that is one of the many unavoidable side-effects of this treatment.

I am not able to get through one day without Duchenne’s ugly facing popping into your head at least once.  Some days it’s not so bad, some days it’s the first thing I think of when I wake up and the last thing when I go to sleep. It’s hearing about the demise of other children all too soon and too unexpectedly and wondering where the bullet is waiting for you in this game of Russian roulette – will your child be one of the exceptional ones to make it past 30, or will he be snatched away before he even gets to 13?

It’s also though a new perspective on life, how short and beautiful it is. It’s doing things now because you know your tomorrows are limited. It’s thinking “Why not have chocolate for breakfast?” and planning journeys you really can’t afford so that you can teach your child he can go as  far as he wants and to accept no limitations.

It’s tireless work shoe-horned into your daily schedule to make changes where you live, for your child and all children with a disability to be accepted, for the government to pay attention, for Big Pharma to listen to your voice shouting “My child deserves to live!” It’s meeting some incredible doctors and scientists who are working tirelessly to bring an end to this condition.

And we are so close. This is the first time in history that the researchers working on DMD believe the breakthrough will be achieved within a decade.

It’s not easy to imagine what it’s like to be the parent to a child that you are likely to outlive, and I’m not asking you to put yourself in that position. I am asking you though to talk about us. We are here, we want to be heard. You might be reading about Duchenne here for the first time, or you might be familiar with it already. Spread the word and help us in our race to a cure.

As I watched the success of the ALS ice bucket challenge, I came up with my own little way of spreading awareness and raising funds for DMD and I invite you to join me if you like. I call it the DMD Chilli Challenge. Take a spoon (any size) of chilli sauce (any brand) and make a video of yourself eating it. Then wait 10 seconds before drinking water. In this way we’re trying to show that time is precious and raise awareness for DMD. If you want to help, have some fun with it and spread the word.

Today, think of my son Hermes and all the other children like him. They cannot run very fast or very far, but they are in a race against time. Join us, carry them on your shoulders, and help us get to the point where the next parent who gets a diagnosis for DMD and asks what the treatment is doesn’t have to hear “There isn’t anything that can be done.”

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Two Songs

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Emotions are a funny thing. Sometimes all it takes is a taste or smell to bring back a memory. And suddenly it’s like you’re there again, reliving every moment.

After my son was diagnosed with Duchenne Muscular Dystrophy last year, my world view went within a few seconds from being positive and rosy to realizing just how infinitely cruel life could be. I went through the opposite process I had gone through when I had fallen in love as my heart broke into pieces so tiny I don’t know if I’ll ever be done picking them all up again. Songs began to make sense, and listening to them would hurt so much I would be left in tears.

In the immediate months after Hermes was diagnosed, there were two songs I couldn’t bring myself to listen to. The first was a Greek song, called Pio Psila (Higher). Listening to it, you wouldn’t think there was anything offensive about it. It’s an upbeat song about two young people falling in love. But this is the song I listened to on a loop with my son, trying to get him to nap just before we ended up in hospital.

When we came out and had a new world to face, it was almost a year before I could listen to it without feeling like I’d been stabbed in the heart. The reason was these lyrics:

The world around us is now changing

I’m not afraid, it doesn’t scare me

I won’t waste a single second

Whatever you want, I will do it for you

Our only enemy is time

In your arms, the pain goes away

Don’t leave me, hold me, embrace me, love me

The world around me had changed. And I was terrified. I ran around like a headless chicken trying to find anything, any shred of hope, any piece of wildcard research, something to get me out of bed every morning when all I could think was “100% fatal.”

But the line that killed me was that time is our only enemy, because it’s so true. We are happy, in our day to day lives we almost forget that somewhere a clock is ticking and it’s ticking against us. I so often look at my son and wish I could freeze time to now, that he would never get older than 2 years old, that he would always stay small enough for me to carry anywhere so that he wouldn’t feel his disability manifest, and that I could spare him the deterioration I know is coming.

The second song was People Help the People by Birdy. I always thought it was a beautiful song and once again I used to play it to my son trying to get him fall asleep. Even now, I can barely listen to it:

God knows what is hiding in those weak and sunken eyes
Fiery thrones of muted angels
Giving love but getting nothing back

People help the people
And if you’re homesick, give me your hand and I’ll hold it

I would wonder as I was stuck in traffic – how many of these cars contain parents who have lost a child? How many people did I walk past today who have a child that’s suffering? Are we the heroes? I’m told so often how brave I am but I don’t feel it. I’m just a mother that gets up every morning and tries to keep her family’s life rolling as best as she can, hoping for the best and planning for the worst. Is it brave when you are learning to live with the fear of the future, like a constant dull pain?

And yes, I am terribly homesick for a place that I know I can’t ever go back to. So homesick that I cry from frustration thinking about the alternative path I should have been walking, in a perfect world with a healthy child and such a simple future to plan.

But it’s the help of friends and family, the other people that helped me that gets me through. We can’t ever go back, but we can go forward, and maybe what’s around the corner won’t be as terrifying as the monster I imagine in my head.  They have held my hand as I’ve cried and emerged from the shadows with their own stories to give me courage. I think, in the end, they are the heroes because every day, they save me.

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