Monthly Archives: August 2016

One Day Soon

Dear parent whose child was just diagnosed

I want you to know that you are not alone. I know your despair, I feel your anger, I hear your heart breaking, I see your tears. I understand these things because I once stood exactly where you are now. I built the walls on the roads that would take me out of my despair, I cut myself off from the people who could help me, I feared the next day let alone the years that would become my future, I pondered how life could be so cruel and I wondered how I could carry on amidst the sadness that had just descended upon my world.

But four years on, I’m still living, I’m breathing, I’m smiling and laughing. I’m going to work, I’m seeing friends. When I wake in the morning I am no longer consumed with fear and sadness. And to the untrained eye, I even resemble the old pre diagnosis me.

Don’t get me wrong I still can’t look at my son sleeping and not have my heart break a little more, but my mind will quickly turn to wondering if he’s dreaming of all the fun he had today. I can’t watch him climb steps and not feel sad that he lingers so far behind his younger brother, but then I look at his face –  his only goal is to get to the top and today he did that and he is happy, so I am happy. When he tells me he wants to build houses when he’s a big boy, I want to curl up in a ball and hide from the world so that I won’t one day have to tell him he can’t – but then I realise there’s more to building houses than carting bricks, you can’t build a house without a drawing, and that he will be able to do even if he does need technology to help. And when he tells me what he’s going to do when he’s a man, I feel like I just might die there and then because I know he may not live long enough, but then I remember that there’s the possibility he will, and it’s that possibility that I focus on. I still have bad days and I still have really bad days but right now it’s mostly good days and I can live with that.

The coping mechanisms did not come easy. I had to find the things that would give me focus. I had to train myself to push the negative thoughts to the back of my mind so I could see the joy around me and understand that, with the exception of genuine fears for the future and a sadness that will always reside in my heart, I was still the same person and my son was still the same little boy he was before diagnosis. And even now I still build those walls around myself, I still cry a lot, I still worry all the time and my heart is always broken. But the walls are only ever temporary because that little blue eyed boy who calls me mummy, needs me more than I need to find comfort. He is my whole world but I am also his. I discovered that making him happy made me happy, and no matter what the future brings, if I can keep him happy, then I will be happy too. And if and when Duchenne should win this battle, only then will I even consider letting it consume me. Duchenne will not ruin my son’s life no matter what it does to me.

So parents please allow yourselves to grieve. What you feel right now is natural. Your world has irreversibly changed and change is never easy. You will live with a sadness that will always be there but I promise you will find a way to manage this new life. It may not be today or tomorrow, but one day soon, come tea time, you’ll realise that you didn’t cry when you woke that morning. One day soon, you’ll take your kids for a day out and you’ll smile and laugh with them and you will feel joy. One day soon you will have a bad day but the next day will be good. One day soon you will adjust to this life and I promise you will be happy again.

Until then, just know that you are not alone. Reach out and you will find a hand to hold and an ear to listen and an understanding soul to lean on.

Yours faithfully

Another Duchenne mum

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My ‘World’s Strongest Boys’.

Those within the Duchenne Community will likely already be aware of the new brand, World’s Strongest Boys, created by Duchenne charity, Duchenne UK. But for those who aren’t, The World’s Strongest Boys campaign is designed to help raise awareness of the condition and to draw attention to the strong defiant spirit of boys with Duchenne despite their physical weaknesses.

My boys’ Strongest Boys t-shirts arrived today and got me thinking about how each of them really is the World’s Strongest Boy for very different reasons.

While Luke is clearly physically weaker than Coen, his sheer determination and will to do whatever he chooses is truly awe inspiring. To see the effort he puts in to climbing stairs, getting up from the floor, running, squeezing the play dough from his dough bakery set, and all with a smile on his face, would put any athlete to shame. Not because he can do what seems like regular things but because to him those regular things feel like what pulling a lorry or lifting twice your body weight might seem to you or I.

Coen is my other World’s Strongest Boy, because at just shy of 3 years old, he already recognises that his big brother’s needs are different to his. He is the happiest and giddiest little boy I’ve ever met even though he maybe doesn’t get the attention he should and even though he has to walk when his legs are tired because Luke’s are tired too, and even though I try, I can’t carry both of them together for very far and sometimes it just isn’t safe to do so.

Both my boys show strength in their understanding that mummy is often distracted. Sometimes the worry of raising a life limited child can be all consuming meaning that coincidentally countless hours are spent worrying, researching, fundraising, campaigning and awareness building, trying to buy time. But they never bat an eyelid, they just go with it. My boys are my heroes and more worthy of a medal than any strong athlete picking up medals in Rio this Summer.

And what’s more, as they continue to grow, so too will their strength. Luke will have to persevere through the inevitable decline that is coming. He will not be able to do all the things his friends will do. For him walking and running will be just a memory. He will have hospital appointment after hospital appointment. He will, hopefully, take part in clinical trials that will help to create a better understanding of his condition for the boys that come after him. He will struggle to sit up straight. His arms and hands will give out on him. And he will struggle to breathe on his own. But knowing his character, he will smile through it all and live his life to the fullest. His strength will keep me and everyone else who loves him going. If that isn’t worthy of a World’s Strongest Boy title, then I don’t know what is.

And Coen will make so many sacrifices for the love of his brother as he gets older. He will sacrifice time with his mum while she tries to meet Luke’s needs. I’ve no doubt there will be times he will stay home with Luke instead of going out with his friends so that his brother doesn’t feel lonely. He will miss running around the house with Luke when Luke is no longer able to do so. He will be his brothers best friend and confidante and will feel the hidden anguish that Luke may sometimes feel but will never tell his mum. But what will make him especially strong is that he will one day realise that Luke’s life will be short and he will have to find his own way to deal with that, and then one day, he will have to face the future without his only brother. I know that feeling, and it’s the hardest in the world. But my boy is made of tough stuff and another worthy World’s Strongest Boy title contender.

I’m the luckiest mummy in the whole wide world!