Monthly Archives: February 2016

It’s International Rare Disease Day. This is what it’s like having a child with a rare disease.

rdd-1024x365“You’re so brave.”

I hear that a lot when I tell people about my son, but I’m not convinced it’s true. Brave is facing up to great injustice knowing what it’s going to cost you. It’s running into a warzone with your camera or notebook when everyone else is running the other way because you feel the world needs to know the truth. It’s facing down to corrupt governments and broken systems. It’s placing your foot on a wobbling rubber boat with your children in your arms, not knowing if any of you will live to see the shore across the water.

I don’t know if I’m brave. I don’t know if it can be considered brave to simply try and survive the bombshell that was dropped on my family.

Because I don’t feel brave. I feel scared, a lot. I feel sad. And I feel so, so angry.

I’m writing this post because every year, the last day of February is International Rare Disease day. It’s a day to mark the existence of families like mine and children like Hermes, so that we may all raise awareness and fight for better treatment for our children.

The most surprising thing about rare diseases is that they’re not so rare. At the current rates of diagnosis, the fact is that there already is or will be a person with a rare disease in your current or future family. That means that all of us know or are related to someone with a rare disease.

I can’t speak about the other rare disease out there – there are so many – I can only talk about Duchenne and the effects it has on my life.

I’m normally quite a positive person, but my God does it get hard sometimes. The last few months have been quiet from me on here, because I was struggling to keep myself on track.

We’ve had a few medical trials collapse in recent months. This year we come up to four years since my child was diagnosed, and I have to admit that my initial optimism is starting to wane. There is so much research, but it all seems to fall apart at the last hurdle. Hope is all I have left to keep me going as I watch the odds of my son’s survival start to shrink. And I can’t help but feel that bitter knot of fear in my stomach.

I was one of those people who really wanted to be a mother. I wanted it so badly. So when it happened, I felt like life was almost too perfect. Hermes was a cartoonishly cute baby, absolutely adorable with huge chipmunk eyes and a little quif of brown hair on his head. Unlike a lot of newborns, he was cute from the moment he was born. A picture-perfect baby. He looked like a kewpie doll with his round little face – we didn’t know then that the larger than normal head is a symptom of his condition.

Motherhood was everything I had hoped for. Nothing has made me wonder the meaning of life, whether there is any meaning at all to it, more than the experience of having something so beautiful turn into something so nightmarish. Where in the laws of nature does it say you have to raise and nurture a child you know is very unlikely to outlive you? It feels like a sick joke sometimes. The day of his diagnosis, it was unusually warm, and I sat on the balcony in tears, my head in my hands saying over and over again “I can’t do this. I can’t do this.”

So, not as brave as I look, and not as strong either. You know that thing people say about life only giving you as much as you can cope with? I don’t believe that one either. I’m not so brave. I’m scatterbrained and disorganised – I forget to give my son his vitamins, how am I supposed to remember all the medication he’s going to need in the future without missing a dose?

Like I said, I get so angry sometimes. Here are some of the things that Duchenne has taken from me. I won’t get to raise my hand up over my head and say “Hermes look at how tall you got!” I won’t get to tell my child to take the bitter steroids because they’ll make him better. They won’t. They’ll just steal us some more time with him. When he cries through giving blood or all the various medical pokes and prods, I can’t comfort him by telling him that that’s to make him better either, because it isn’t. It’s just to keep track of how quickly or slowly I’m going to lose him.

I tell him to eat his food so he’ll be big and strong, knowing that neither of those two things will happen either. He’s starting to fall more. His symptoms are getting a little worse, and it’s like watching a monster come and claim my child piece by piece. It’s unnerving, because I can see it, and my child can’t. I can scream and cry at the monster all I want to go away and leave my child alone, but it won’t. And all I can do is watch. All I can do is wince at his wobbly run, or the superhuman effort he puts into climbing the stairs at the park. And I wonder, if the monster scares me so much, how am I supposed to convince my child not to be afraid of it when he finally realises it’s there too?

I cannot begin to describe to you the pain that comes with your child having a rare disease. It’s a pain that never gets better. Over time, you just learn to live with it and try to absorb the way it increases in intensity over time.

I generally cope with the bumps in the road, but last week when I saw Hermes fall twice because his legs simply gave out from under him, I felt like I would go out of my mind with fury. Somewhere inside me, I lashed out against how unfair it was, and in that moment, on that day, I confess that I absolutely hated my life. Like I said, I don’t normally let it consume me like this. I just wanted for once to drop the mask and show you the full, ugly reality of life with a rare disease.

I’m not brave. I’ve just somehow managed to keep putting one foot in front of the other, and it must be said that those around me are to credit for this in a large part too. It’s every person who has taken time to listen to me rant, the friends who treat Hermes no differently, who all took turns carrying him a few months ago so that he could see the view from the top of the Acropolis. People like you, who’ve stopped by to read this, and now you know that today all us families with rare diseases around the world are waking up and carrying on living for the sake of our precious family member. I don’t want you to feel sorry for us for what we have, I want you to stand next to us for it. 

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