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 – 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 — 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