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To the Parents Who Just Stepped Into the Unknown of Their Child's Illness

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 and see his only goal was 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 ‚Äď 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.¬†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 ‚ÄĒ 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. I had to understand¬†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 may¬†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¬†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