Category Archives: duchenne

September 6, 2017 · 9:54 pm

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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February 9, 2017 · 11:48 pm

Dancing With the Demon In My Mind

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Illustration By Ted Ed/Helen M. Farrell

There is something magical about the Greek sea. The first time I ever saw it I couldn’t get over how blue it was. I’d only ever seen the murky green waters of the river that used to run a short drive away from my house when I was a child – on precarious internal flights from Bahawalpur to a larger city, you could see the patchwork of green fields growing from any space its banks offered. Apart from that, the cloudy, freezing waters of the Atlantic, and briefly on a holiday, the turquoise waters off a Malaysian coast.

But I had never seen a sea like this. It was so blue I wanted to drink it. It was intensely beautiful, but frightening at the same time. I only learnt how to swim at 23, and whenever I go into the sea, it scares me a little. The moment I can’t feel the bottom any more I always feel a shard of panic before reality replaces my fear – there are people around, the shore is just a few short meters away, the sun is shining. I’m safe.

Living in Greece, I learnt to make the sea a part of my life. And a few summers ago the sea was also my chosen method for wanting to end it.

This is one of the hardest blog posts I have ever written, because it makes me so uncomfortable. It’s a post I never intended to write. The things it contains only recently became known to the very closest people in my life. This story was never a story to be told, because it makes me feel ashamed. But the fact that I reached the point of deciding that killing myself was the best option came about because of silence. It came about because of the stigma attached to mental health. I was so horrified at the hideous the journey my mind had taken that I chose to stay silent rather than get help.

So what changed? Why now? It’s down to one man, a kind and gently man with a sweet smile, curly hair and hazel eyes. His name was Bernard Thomson, and he was my great uncle. One week ago, he killed himself.

My mother’s side of the family suffers from a lot of mental health issues. I lost two cousins from the same family to suicide. My maternal grandfather had such severe depression that nothing seemed to help, not even electroconvulsive therapy. I have another cousin who I am pretty sure is bipolar because of certain thoughts and patterns of behaviour he has mentioned, but who has not sought help for himself, and a great aunt who thankfully tackled her depression after she started having suicidal thoughts.

That’s a lot of depression in one family. While the link between inheriting depression isn’t yet proven, there is some evidence to suggest it can run in families, and I do think that one day we’ll isolate a gene responsible for messing with our brain chemistry. This is because the type of depression in our family seems to me to be so specific, right down to the thoughts people have.

Uncle Bernie as we knew him, had been in hospital at the start of the year after going missing. After thinking that he wasn’t going to come to any harm, despite his suicidal thoughts, the hospital discharged him.

We all went back to our lives, until a week ago when my Facebook timeline began filling up with messages from family members asking if anyone had seen him. Several hours later, a runner reported finding discarded clothes by the river. He’d drowned himself in the freezing winter river, just as he had said he was going to do.

When I heard this, my heart sank. I thought about him in his last moments, as he made his way to the river, the demon in his mind whispering in his ear “This is a good plan, this is a great plan. Let’s die, that will make it better for you. It will make it better for everyone.” That same demon which had whispered those same thoughts to me a few years ago, thoughts which I almost listened to.

The fact that I was so depressed didn’t spring from being the mother of a baby and a toddler. It didn’t spring from my older son’s diagnosis. It was a combination of things, most importantly that the first time I remember feeling depressed, I was 11. It’s always been there, hiding somewhere in my head. The bombshell dropped into my life certainly made it worse, but I do feel that if it wasn’t this, it would have been something else that set it off. Sometimes it’s near the front, sometimes it’s near the back. Sometimes it breaks free and goes on a mission to destroy my life, and very nearly destroy me.

I should have got help when I began to sink, but I didn’t because I didn’t want it to seem like I couldn’t cope. Everyone else coped, why couldn’t I. So I continued to swallow what I was feeling, until it flooded every part of me.

I was in agony. Imagine being stuck in a room with a person who is insulting you, telling you you are a failure, useless, hopeless, you’ll never be happy, you’ll never be anything. In this situation, you’d get up, walk out of the room and slam the door behind you. Now imagine that the other person is your brain. I got so exhausted by the constant self-flagellating dialogue running in my head like a broken tape, that when one day another little voice said “You should probably kill yourself” it seemed like a brilliant plan to escape how much mental pain I was in.

If you have dealt with mental health issues and suicidal thoughts, let me issue a warning now that what follows might be a trigger for you. If you don’t want to read the details, but want to know how I came through it, stop here at the first line of asterisks and continue after the next line.

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It’s shocking when I think back to it now how clear-minded I was when I laid out the pros and cons of each method of taking my life. It was if I were planning a birthday party, not my own death. But I know now that this is a common experience of those who go through what I did. Your brain latches onto a solution to escape all the pain, albeit the wrong one, and methodically sets about setting the plan in motion.

I had already got past how upset my family and small children would be. By this point I had perfectly justified my thoughts by convincing myself that I was so useless that everyone would be better off without me. Sure, there would be some sadness. But my parents had three other daughters. And my kids could get a much better functioning stepmother instead of the broken version of a parent they had. What was not to like about this fantastic plan??

After running through the various options, I ruled out whatever seemed too messy, too traumatic for whoever would find me, and would leave too many bad memories in my house, and I settled on the perfect plan. Like I said, the sea scares me, because I’m scared of drowning. Drowning to me seems like a terrible way to die.

So that’s what I chose. My self-loathing was so extreme by this point that I picked the method I knew scared me the most and would make me most miserable. I planned to drive out to the coast in the middle of the night, swallow as many sleeping pills as I could and walk into the sea. I even picked out what I would wear.

Bizarrely, having settled on how I was going to kill myself made me feel a bit better, and more purposeful. It didn’t matter how much I was suffering and making everyone around me suffer. It would be over soon.

****

In the end, I never came close. I’d love to tell you that this happened because of some beautiful epiphany about how wonderful life is, but by that point my self loathing was so extreme that I thought “You’re so useless, you’ll botch your own suicide, end up paralysed or with locked-in syndrome and then be an even bigger burden on everyone around you.”

I was too tired of living, but too scared to die. And so, not being able to guarantee that my suicide attempt would actually kill me, I backed down and decided to suffer through living. I sat at the bottom of the well I had fallen into, looked up at the pinprick of light, sighed heavily and started a half-hearted attempt to climb back out.

It took a lot of work. There is no easy way back when you have fallen so far down. But, bit by bit, day by day, I got closer to the light. I went back into therapy. I tried medication for a while, and it was great. I felt the sharp edges of my mind dull slightly so I couldn’t slash myself to pieces on them any more. I learnt that I could and in fact deserved to function without letting the demon of depression take over my life.

I know better now. I know when I wake up and think “What should I do today?” and my brain answers “Why don’t you kill yourself?” it’s brain chemistry. I know it’s how my thoughts are wired, and I am getting better at ignoring that voice. I’ve identified my triggers, which I try to avoid, and made time in my life to do things that make me happy. I try to be more open about my own journey with mental health, purely because I wish more people talked about it. When I hear other people describe symptoms, thoughts and behaviours I’ve experienced, it’s reassuring. I know I’m not alone.

People tell me all the time that I’m the last person they think could ever have been so depressed and I don’t really know how to answer them. There is no right or wrong way to have depression, no right or long problems to bring it on. It just happens.

When things are good, I feel like my heart will burst with joy at how beautiful life is. I love my family, I’m living my dream and making my living from writing and even with all its problems, I adore the city I live in. No one knew about the fact that I had been suicidal to the point of making an actual plan to take my life, not even my husband. Being that good at hiding what I was going through is not a good thing. It’s a sign that something was not right. When you are working so hard at seeming normal even though you are falling apart that it’s consuming practically all of your energy, something’s wrong.

Writing this post that makes me feel very exposed right now. People I know will read it, and I don’t know what they’ll think once they do. But I wanted to take another step towards opening the dialogue that’s so badly needed when it comes to mental health. Step by step, the demon can be silenced. Having stood at the edge of where my great uncle’s mind took him, I feel so sad that the toxic, black demon of depression got him. It convinced him he was better off dead.

If that demon torments you too, I want you to know that you are not alone. It happens to a lot of us. The demon will tell you that no one cares about you, you are useless and you should jump onto the tracks as the metro approaches. It will tell you that people would be happy if you died, because you are dragging everyone down with your problems. It will tell you you are selfish and crazy – normal people don’t think like this. Why does everything have to be about you all the time and the things going on in your head?

Don’t listen to the demon. Get help. For now, no one has found a way to extract the demon from our brains but there are plenty of ways to keep the demon in check, including therapy, medication, exercise and more. You are not alone, and you are not crazy. The chemicals in your brain aren’t working properly. I’m not going to tell you that when you step back from the edge, you will instantly feel better. You won’t. You might not be better for a long time. But I promise you that a day will come when you will feel at peace again and you will think “I’m glad I’m still here.” You can overcome this. Most importantly, don’t let the demon convince you that you are not loved and you are not precious. You are.

I suppose I won’t ever know if sharing this post was the right thing to do, but I hope it helps towards de-stigmatising mental illness. If you’d like to help that effort, there are many ways. Listen to The Hilarious World of Depression. It’s a podcast where the presenter (a fellow depression sufferer) interviews comedians about their fight with depression, and to me, it’s a great comfort to hear other people describe their own battles. Visit Make It Ok. Here you will find lots of information and advice on talking about your own mental illness, and how to constructively talk to loved ones about their battles with it. It’s one more step towards us all being better. You deserve to be well, and you can get there. 

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September 7, 2016 · 3:53 pm

With a little help from my friends (and pills)

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I try to avoid writing these posts. Mostly because they scare my mother, who thinks I am utterly miserable, to which I wave my boxes of Xanax in her face and say “I’m okay, Mum!”

No, really, I’m okay, most of the time. Sometimes, I’m not though. Sometimes I just don’t know what to do with myself. My life feels like an impossible mountain I’ve been sent to climb with a spool of string instead of rope helpfully tucked into my pocket by the Universe. And as wonderful as it is to mark World Duchenne Awareness day each year because it brings us one step closer to the cure, it’s also involves me coming face to face with the fact that all is not right in my world. I’m not always up to that task.

Remember the movie Run Lola Run? Whenever the scenario doesn’t play out the way Lola wants, she goes back to the start of it to try again. This is the feeling I had the moment I was given Hermes’ diagnosis.

My brain just couldn’t process what I was hearing. My son has what? No, you’ve got it all wrong. That’s not what you were supposed to say. I came here today for you to tell me that the genetic test was normal, my husband isn’t even with me, that’s how ordinary this conversation was meant to be. You’re not supposed to be telling me my son has Duchenne. Go back to the start and tell me something different, tell me what you were meant to say, which is that everything is fine.

I think of that moment still, though not as often as I used to, because it represents the moment my life was cleanly cut from the path it was following and set on another one. For the first year or so after Hermes’ diagnosis, I obsessed over that moment. It played out in my head again and again, as if I was trying to retrace a terrible mistake I’d made and trying to work out all the various things I could have done to make it right. It was if my brain felt it was missing something, some small clue or detail.

Where was it? Where was the one thing I had missed that would unravel all of this mistake and put it right? Was it how the doctor’s assistant didn’t look me in the eye when she came into the room? Was it the two spots she pointed to on the paper in her hand she showed him, saying quietly “Here, and here”? What did that mean? What did “here and here” mean? Where was the clue? Was it in the way the geneticist clasped his hands in the seconds before he changed my life? Where was the clue?

If I could just find it, I’d unlock what had gone wrong and be able to set it right. That would be my Eureka moment. But even my frantic brain knew somewhere that that wouldn’t happen.

In my weak moments, I’m resentful of being reminded of Duchenne in my lives. Hermes is starting to struggle a bit more, and when I hear the impatient kids on the stairs of the slide behind him stomping their feet and yelling at him to move faster, I really want to let rip at them. Very, very rarely, I am angry with everyone else for being able to walk away from my life, when I have to shut the door behind them and go back to living it every day.

I don’t mind telling people about Hermes, but there are times when I’ve got so used to this reality that I forget the impact it might have. I’ll flippantly mention life expectancy, and the next thing I know the person I’m talking to is sobbing. Whoops! “It’s okay!” I say cheerfully “It’s not so bad!” Cue more sobs.

The truth is that often, life is okay. It’s fine. It really, truly is not so bad. We’re happier than a lot of people. Having such a shadow cast over our lives has made us appreciate the light much more. Eating a delicious slice of melon turns into this year’s landmark event – “remember the summer of 2016 when we ate that really delicious melon? Those were the days!” We save the seeds for planting later, knowing exactly that we’re much too neglectful of our plants for them to ever bear fruit. We’ll ignore that, and plant them anyway.

Our joy is in our life as a family and the friends who rally around us – even a small gesture like changing your profile picture to a Duchenne balloon means so much. So, despite it all, somehow we do find a way to be happy in our new reality, and for everything else, there’s Xanax.

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September 7, 2014 · 10:52 am

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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July 1, 2013 · 3:38 pm

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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June 17, 2013 · 12:48 pm

Living with a Disability

When you’ve been through a traumatic experience, it doesn’t take much to transport you back to that time. For me, it was a trip back from London to Athens. I arrived with my two year-old son running a high fever. Just before we put him to bed, my husband and I tried to give him something to bring it down. In his distress, he vomitted all over himself, the bed, our bed and us.

As I wiped him down and my husband collected the spoilt sheets, we were silent and grim-faced. It wasn’t as much to do with our son, who was now sitting happily chatting as I cleaned him. The scenario was too close to the bone for both of us and transported us back to the start of our own personal nightmare.

Just over one year ago, we were watching over our son in similar circumstances, only this time the vomitting wouldn’t stop, and our son’s cries produced no tears. Alarmed, we rushed our son to hospital and found ourselves trapped in a spiral of endless tests and rounds of doctors.

We went into hospital with something quite straightforward. Our son had contracted rotavirus, like most of the other children on the ward during that time of the year. The difference was that unlike all the other children who eventually got better and left, the doctors kept returning to us with furrowed brows, flipping through our son’s records and unable to get his bloodwork to normalise.

Nine days later, having run out of ideas and with only a genetic test left to run, they discharged us. Three days after that, we received a diagnosis that turned our world upside down – Duchenne Muscular Dystrophy.

A year later, the highs and lows I go through are less intense. The pain has not lessened, but my ability to bear it has improved. There are still little things that remind me of the future we face when I play with my little boy, the fact that he can’t climb the stairs of the slides, or how he can’t jump like the other two year olds that pogo-stick dance nearby. And of course, writing about it helps me cope.

I originally wrote about my son’s diagnosis on a separate blog. I share that post below with you:

There are moments  when your foundations are shaken to the core. Moments when you realize how frivolous your life up until now has been. In those moments you yearn to go back to the yesterday you so recently complained about, where your biggest problem was unpaid bills, or how you never managed to get through your pile of ironing. Those moments humble you. They come at a terrible cost, but the only way to keep going, the only way to not just fall on the floor and wish you could simply evaporate, are to believe that you’ll come out on the other side. Somehow.

For me that moment came just over a year ago sitting in a chair of a docto’rs office, and I wished I could run away back to the previous week where my biggest heartbreak had been listening to my son scream in terror outside the room where he had had his blood taken every day for nearly nine days. I was not allowed to be with him. Standard practice to stop hysterical parents from interfering with important procedures I suppose. I stood outside that door and wept, every fibre in my body screaming to be with my child.

It should have been so ordinary, so routine. He had a stomach bug. He kept nothing down. We grew afraid and raced him in the middle of the night to Paidon hospital in Athens’ centre. One day passed. Two days. Three. Children around us came and went. We remained. One aspect of a blood test was wildly out of the normal range. They tried various things. Blood was tested daily. They wouldn’t let us leave. “It’s probably nothing” everyone told us.

We all hoped and waited. My son played with his toys, annoyed by the drip in his hand. It’s probably nothing. Armies of paediatricians visited. They poked and prodded. When students appeared alongside the doctors, I grew increasingly worried. Make him stand, make him sit. Does he walk? When did he crawl?

It’s probably nothing…

By the seventh day, I was growing hysterical. I walked the corridors endlessly with my son in his pushchair, singing to him as I tried to get him to sleep. I still have dreams where I’m back there walking those corridors, trapped and unable to leave. When the cardiologist refused to give consent to discharge us, saying we were free to do so at our own risk, I don’t remember how I got outside, but outside I fell to the floor and howled in terror.

The hysteria passed, but each doctor who visited looked over the blood tests, frowned and advised staying put. I clawed at my arms. They ended up covered in red welts. I dug my nails into my scalp. I was losing it.

The stomach flu passed. We were still there. Finally, with no change in the blood results, we were allowed to go home. And there I enjoyed three days of bliss. Those were the last three days of life as we knew it. Something inside me sensed it. I kept saying “It’s probably nothing. The rest of the tests will come back fine.” Something in me didn’t believe it.

On a sunny Monday morning, I sat opposite a grey haired geneticist, a kindly man. I was there to hear good news. I felt sorry for how many times this man had to tell parents something terrible.

“I’m afraid the news I have for you is not good.”

My stomach plummets. I get a strange sensation I’ve never felt before. I feel like I am falling into myself.

Stop the ride. I want to get off. I don’t want to hear the next sentence. I want his mouth to stay shut. I want to pick up my son, thank him for his time and walk out of there. I don’t want to know. Normal slides away, and I have no choice but to watch it slip from my hands in the next few seconds.

My son has Duchenne’s Muscular Dystrophy. I don’t know what this means. I don’t dare ask. I stare at the doctor. “What will his life be like?”

“I’m afraid I can’t tell you.”

We often hear people say their heart broke, or their world collapsed. You don’t know what those words mean until it really does happen to you. I was in pain, my chest crushing in on itself. I wondered how my heart still beat. I wept in the doctor’s chair. The future I had imagined for my son vanished. I was left with nothing, just a big question mark, darkness and questions I was too petrified to ask. My tears didn’t last very long. Shock took over and they dried. “Pick up your son” the doctor gently advised.

I went to him, this precious, perfect, wonderful creature. I lifted him up. I looked at his beautiful puzzled face. I hugged him and breathed in his delicious smell. This was the creature I loved more than I could ever imagine, so much that  a lifetime with him was not going to be enough. Now, I am probably not even going to get that one lifetime. He couldn’t say it, but his expression asked all the questions. Why are you crying? What’s wrong? I’m bored.

My sweet angel. The little soul that had given me the gift of motherhood. I had wanted everything for him. I would have done anything. But no money in the world could buy him a new set of genetics. I kissed him. Save me, I silently, ridiculously, begged my little boy. Save me.

The months since that awful day have passed slowly. We have educated ourselves and began an aggressive round of visits to doctors in Greece and the UK. It’s not easy, because our son has developed a terrible fear of doctors after his nine days in Paidon. We fight on. We fire off emails. Friends trawl the internet for leads of new therapies. It sometimes feels like a search for a figment of our imagination. My husband and I make light of what’s happening. We push each other on.

As time moves on, we really do have more good days than bad days. But when the bad days strike, I feel exhausted already and we’re only at the start of the road. I feel tired. I feel so so old. I cry like a wounded animal. I cry for my child and what his future does or doesn’t hold. I cry tears of panic – I can’t do this, I’m not strong enough, I can’t raise a child I will most likely lose if no cure is found in the next years. I cry because a mother’s first job is to protect her child, and I couldn’t save him from this.

I get selfish and weep angry tears. Why him? Why my child? Why us? Weren’t we good enough? Haven’t we always been decent people? Haven’t we always helped the needy? Why, why, why? I torture myself with these questions, knowing that they’ll lead to nothing.

In the end, there is no answer to this question. In our case, the why will never be known. My son’s case of Duchenne’s was down to a random mutation. I am not a carrier, which is a relief because I have three sisters, and Duchenne’s carries down from the mother. When the news was broken to us, my older sister had just got pregnant after many years of agonized failed attempts. I was immediately sent for testing to see if I was a carrier based solely on my sister’s pregnancy. My test was pushed to the top of the pile and the results rushed through, in case she too would need testing.  Luckily, I was clear, which is a blessing because she is expecting a boy.

Amongst the darkness though, there are rays of light. I found a strength I never knew existed in me before. I have said it before. I’ve had an easy life. Nothing has really ever tried me. The first time I was in hospital was to give birth, the second was with my child. I’ve always been shielded from the harshness of life. I never imagined I would still be standing after this. The crushing pain in my chest is not there anymore when I wake up each morning. We check where we are on a grotesque ladder of genetic conditions, and morbidly console ourselves saying at least it’s not this or that.

I try to exude positivity. Some very promising therapies are being worked on right now. This disease may affect my son’s body, but his mind will remain intact. He can still use his intellect to be anything he wants. I found a drive I never possessed before. I retook and finally passed a mathematics-laden financial exam my office had been badgering me about for years and which I had convinced myself was too hard to pass.

My huband and I work hard at untangling our messy heads. We never imagined this would be the path our life would be on eight years ago when we met under the blazing Athenian sun. He is my rock, and every day I thank God that I have him in my life. There is no one else I would rather have next to me in this battlefield. We talk and make action plans. We fuel each other’s positivity in the face of impossible statistics. There are no miraculous getting out of the wheelchair and walking moments with this disease. There are no “I beat Duchenne’s” T-shirts.

But most of all I get my strength from my son. He gives me endless joy and hope for the future. I know he has a strong spirit that will see him through, because in the end the ultimate trial is his, not ours. When I watch him sleeping, his beautiful limbs sprawled out like a starfish, I want to kiss him endlessly. I rub his hard muscles, the early sign of this syndrome. I hope he is not in pain. I wait for the morning when he rolls out of his cot onto me with a smile and a delighted “Mama!” as if returning to me after years away. I try to remind myself of how precious our time together is when he has a tantrum or insists on chocolate for breakfast.

This post has been hard for me to write. I have cried and relived moments that still cause me enormous pain. I have been composing it in my head for months, I just couldn’t bring myself to write it.

I hope you don’t think it was oversharing. Writing this has helped me order my chaotic thoughts. But most importantly, I wanted to make people familiar with the name of the disease. This is what I always ask of friends when they want to help – make noise, donate, raise awareness. The more people know, the more funds are raised, the faster we get to a cure.

Throughout our journey to this point, we have been cared for incredibly well by the Greek public healthcare system. We have been treated with great care. Every procedure followed met the current recommended international standard. We were from the start treated with a lot of kindness and patience. The doctors working in the Greek public system are heroes. They do an excellent job with limited resources. Even after being awake all night and dealing with the madness of overnight admissions that often overflowed into the corridor, they were still ready to patiently answer the questions we had about our son’s progress.

We are now primarily in the care of the Muscular Dystrophy Association of Greece. Once again, we have been treated very well and with a great deal of sensitivity. This organization runs on donations alone. I give their site below. Donating even one euro will make a difference.

http://www.mdahellas.gr/

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