There is a unique kind of grieving that special need parents live with every single day. Yes, we like to live our lives as normal as possible, but then, SLAM, something happens that reminds us how fragile our children’s lives really are.

True enough, my Nicky is beating the odds, he’s very much alive and ready to fight and I am ever so grateful he is, especially since I have so many friends who have experienced the loss of their children, and since I have buried a child myself, I know exactly how that feels. I want to delay that horrible fate as much as possible, while continuing to hope for some kind of treatment to come along. That does not change the fact that my hopes and dreams I have for my child die a little more each day as I watch him struggle to just survive.

When Nicky was five or six years old I had hoped a cure would be around by now and that hope kept me going. The sad reality is that it isn’t. Yes, there is a lot of research going on, some of it has already helped Nicky, but we’re far away from something that truly helps him. He’s also much worse off than I had hoped. When Nicky was 13 months old I met a woman that despite having the same condition as Nicky, drove, walked, was independent… if only my son could do any of those things…

Yet, here we are. And I still have some dwindling hope against all odds, because it’s hard to hope when your child pushes against a very strong current. The grieving never ends, either. I can’t let my guard down even for a moment. Sometimes that grief brings me to an uncontrollable sobbing.

If there was one thing I’d want everyone to know it’s to please be aware that parents of special kids, especially those with lethal conditions, are hurting. Badly. We hide this fact so well sometimes we believe it ourselves until something happens to remind us things are not so rosy as we pretend they are.

I try to embrace my grief because sometimes it’s all I have. With that, I try to enjoy every little moment I have with my son.  Every smile is cataloged into my memory, every giggle is recorded in my mind. No moment is wasted or taken for granted, and I know with every fiber of my being that there are other moms who feel the exact same way.

Parents of children with rare disease have to change priorities and our dreams are very different than usual. We cannot put much emphasis on schooling, so as Nicky started thoroughly enjoying video games, I embraced it wholeheartedly – it gives him something to live for, to strive toward and to escape the reality of his condition. Video games are his life. This is him, above, immersed in his game. He plays with his brother now and they are a team on occasion beating the “bad guys”. It’s fantastic to see.

So, when you see a parent pushing a child in a wheelchair at the grocery store or at Target, send them a smile, a kind word, anything. You will make their day.

Love & Light,

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