Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

April 7, 2013 – He’s so perfect.

April 7

It’s not often he wants his photo taken, and usually when I do his swollen face is apparent, and he gets upset about it. But this photo? Oh! This photo shows my boy in all his perfection. It doesn’t highlight his disability, nor his swollen face from years of steroids. And it doesn’t show his sadness. This photo just shows my beautiful boy being, well, beautiful. And almost happy.

Oh, how I love him. How I wish I could give my arms, my legs, my heart to him. Every day he wakes up and his body works that little bit less. Every day he wakes up and his body is a little more tired. And every day he is a little bit sadder.

Today was hard. Today he rode his bike for the very last time. He came back inside from his ride, wounded, his heart broken. Again. And mine as well.

This road we are travelling is becoming very bumpy now, there are dips and potholes and cracks, and even the best driver and navigator is unable to avoid them or know what lays ahead. The only thing we are sure of, no matter how much we try to change our course, is our destination. We are becoming more and more damaged with every mile of this journey, we are hurting right alongside him. We feel his pain, because his pain is ours. We feel his frustration, because his frustration is also ours. He doesn’t know what’s happening, and we don’t know how to help. It’s a journey I wish we didn’t have to take, but we have no choice. We are on this road, we can’t turn back, so we have to make the most of it.

And even though those potholes are getting deeper, those cracks are getting wider, and those dips are even bigger, we will do whatever we can to ensure he still has something to smile about.

Even if we’re crying inside.

  • Ivy - Dear Sharyn,

    While your words above ring with absolute truth, truth that no one can deny, there are ways to get support for ourselves and our families while we are on the Duchenne path. None of us need be alone in the struggle to live with Duchenne. There is, as you probably know, a thriving international community of DMD families online. You may have access to other local families through your son’s health clinic. And you also have the option of seeking professional support of many kinds. An occupational or physical therapist might be able to direct you toward technological supports, such as an adaptive bicycle that would be easier to ride or a bicycle trailer that would allow an adult to pull your son along on a family bike ride. Because sadness and fear are such huge factors for anyone facing Duchenne, please allow me to urge you to seek professional support in the form of a psychologist or counselor. Every family member in a family where someone has DMD could benefit a lot from having someone to talk to.

    In a spirit of deep sympathy/empathy,
    My very best wishes to you and your whole family,
    IvyReplyCancel

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