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Letting My Son Lead When it Comes to His Diagnosis

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Somehow it happened. Three years went by. In some ways it feels as though it went by so quickly. Like it was just moments ago I sat in that little room squeezing my husband’s hand so tightly as the nurse led my happy go lucky 5-year-old into another room to color, while the doctor explained to us our son has Duchenne/Becker muscular dystrophy.

I feel like I don’t even know that person who walked into the room anymore, that young innocent mommy whose heart felt like it had been ripped from her chest in a matter of moments. No, that can’t possibly be me anymore, as so much has shifted, so much has changed. The very person I am at my core, the things that make me me are different.

When I look at pictures of myself prior to three years ago, I can’t help but say to my younger portrait self , “Ha, you thought you knew so much then, you thought you had it all figured out and the future was narrow and clear.” Present day me pities the old version of myself. At the same time, I also feel so terribly sad and wish so very badly to be that person again. To go back to that idyllic time when the mundane inconveniences were all encompassing. When I had the luxury to allow myself to stress about such minutia. In the end, it’s present day me that wins. Inevitably it must be this way, but I must say I have come to embrace it.

Yes, there are those heart wrenching moments, like last week when my boy came home in tears for being such a slow runner in gym class and losing the relay race for his team. As I hugged my son and cried with him, I wanted nothing more than to turn back the clock and make it all better for him. But then something amazing happened. He opened up and talked about his desire to meet other kids like him, and to educate his peers about his disability. He went on to talk about how he wants to make the world a better place, that he feels like this is his purpose. And for the first time ever, I shared with him one of the initial thoughts I had when we first got the news three years ago: if any child could handle something like this, it is him. That given his “old soul,” his ability to comprehend things beyond so many adult’s minds, his endless love and empathy and spiritual nature, this kid will not only manage, he will thrive.

So, somehow the time has passed. With all the emotions, all the physical adjustments, all the appointments, the never ending medical decisions — here we are, and we are doing OK. And the people who we are today are only wiser, better versions of the selves we were three years ago. And although I still pray and work toward treatment and making my son’s life healthy and full, somehow I see how very full our lives are and that no matter what, somehow, we are here and we are strong and we are going forward.

Originally published: May 3, 2018
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