Surviving

I don't know for sure when I broke. I don't know if it was in the moment of diagnosis or before while we searched for an answer. The praying and begging and bargaining I did over those months. Going from doctor to doctor specialist to specialist. Each" there is something not quite right here but we need to do testing" took a little more of me. I thought a diagnosis would give me some magic answer and we would do what we needed to make him whole and then we would move on.

No one told us what they were testing for, which was cruel. I often wonder if they thought they were saving us from hurt, did they think it noble to hand us over to a google search? I knew what the doctor would say that morning. I cried on my knees in the bathroom begging a God I still believed would hear to spare my child. Take me just let him be okay. When they gave us the news it was like our life split from happiness, joy and, struggle but full of color to surviving and gray.

Survival when all around you there is life is cruel. It breaks me apart and I put myself back together again almost daily. I pretend so well. Laugh off the insomnia, Embrace the anger, pack the lunches, take the nap, beat myself up for not being enough on another day and f-ing smile.  Over and over again. Fake the happy, please the masses, be okay because you're the "special parent". Please, everyone, stop saying that. This isn't special. It's not an inspiration. You can't put a bow on it and make it pretty. It hurts and I still pray to a God I don't think is there but if he is that no one else I love will ever feel this "special pain".

I used to think just get through this moment and then it will get better but progressive degenerative illness isn't like that.  It doesn't get better, you don't start to accept it.  You just wait. You wait for the next checkbox. You watch the heel cords tighten, you watch the steroids do their thing, You knew the broken bones were inevitable even as you tried to let him have his freedom, you know what's next and how very far science is from where you want it to be, and worst of all you watch all 3 of your kids struggle to understand that which is senseless.

I like to pretend things are normal, I think any parent struggling with different does the same. We all find a way to live with the different, to find a certain joy in it, but make no mistake I will always grieve for the normal we do not have.  I won't pretend this "new normal" is enough because it's not. Children suffering is just not okay.

Maybe I have broken in the years since his diagnosis, as reality has set in and our life started to feel more and more lonely and isolated.  Maybe broken isn't the right word? Maybe I'm just different now? It's not that life didn't turn out how I planned, because that happens to everyone. It's that life will never return to normal. In our house, there will constantly be a new normal to adjust to, a new challenge to survive, a new thing we can't do anymore. There will always be a loss.