Tag Archives: dmd

Brave friends

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Image by Simona Ciraolo from Hug Me

It takes a particularly brave person to be the friend of a parent with a rare disease. We are not always the easiest company. I sometimes close in on myself and turn my back on everything. I get angry that life could be this way and shut down. When I shut down, I also shut people out.

It’s a brave friend who takes the time to ask “How are you?” knowing that that simple question could unleash a tirade of everything I think has gone wrong, or me tearing myself open for them to observe all the pain I am in: see here? This is my heart, see this spot right there? That’s where the pain never stops because I can’t make my child better. See this part of my stomach? That’s what clamps up so I don’t eat because I’m in a panic about the future. And here, in my mind? Do you see these ash-coloured dreams I dreamt for my child before the diagnosis? Sometimes I go back to them and poke them about, stir the ash around them a little, for no good reason, just to make more of a mess in my mind. See this part where my worry lives and doesn’t let me sleep? Do you see all of this? Are you taking in this anatomy lesson in my personal sadness?

The friends I have know this. They know that I’m sometimes like a simmering volcano because I am so tired, so hurt, so confused, that just asking how I am makes me erupt.

Brave friends are willing to stand in the gale force of my agony and face how bereft I feel. Because apart from the positivity and the determination to give both my children as normal a life as I can, there is also a lot of raw sorrow.

I am in awe of such friends, because the easy option, as I’ve seen several times over, is to not ask. The easy option is to not check how I’m doing, because my answer might be too much for them to handle. Self-preservation is a simpler solution, and I don’t begrudge people that.

I have had people who I thought were friends step out of my life and vanish as if we had never met, and it just makes me value my friends more, because they can ask me “How are you?” and they can take it when I reply “Not great. My son is getting worse, and I don’t know what to do. And what if he asks me if he’s going to die from this and I don’t know what to say? And what if his brother clocks on that this whole thing goes downhill? And what if it makes him go off the rails as a teenager? And what if I forget his medication? And what if, what if, what if?” Other times, these friends will read into my silence and know that something is wrong. That they can pick out the conversation hidden inside the words that I don’t speak never ceases to amaze me.

I don’t know if I thank these brave friends enough. I probably don’t. But they are a priceless asset to rare disease families, because they are the ones who see you trapped in the tornado of your life, and they willingly step into it with you. They choose to be at your side even though they know they can’t fix things for you. They talk to you about their lives outside the tornado and the things their own children do, and they do this with sincerity and honesty, even though they know that the milestones they talk about might make you burst into tears because your own child will never meet them. They ask me how the last appointment went, hoping for good news but ready for hearing about how it all went wrong.

If they are afraid of all this, they hide it very well. Without brave friends, this whole journey would be so much harder.

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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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