Let us count the ways …

To break the same heart with the same shitty diagnosis over and over again.

Mar 2010 – Doc tells me some bullshit. My heart sinks at the look in her eyes. I know it’s bad.

March 2010 – Driving home, Jay reads to me from the Internet about Duchenne. I almost wreck my car. I think I have my first panic attack.

March 2010 – We tell the older kids. Their breaking hearts breaks mine all over again.

March 2010 – telling relative after relative, friend after friend…no one takes it well. i match them tear for tear.

March 2010 – initial test results come back – extremely high creative levels. indicative of duchenne. I think of getting in bed and not getting out. Ever.

April 2010 – lab results return – positive for duchenne. My whole world crumbled. There just aren’t any words to describe the feeling you get the moment you find out –for sure — that there isn’t a fucking thing you can do to stop your son from deteriorating in front of your eyes over the course of the next 10-15 years if you’re lucky.

Do I sound crazy or bitter? I am.

May 2010 – More results from dna testing – Deletions 45-52. Whatever the fuck that means. I know now what the fuck that means. It means my son is very close to having a medication that can slow his progression, only so far it’s only available to kids who can walk (in other words, kids that they can measure progress with). As soon as it is approved, he can get it supposedly, but that’s years in the future. I don’t know what our future looks like.

Broken heart every time he falls. Every time he breaks something. Every time he loses another function. Every time he cries because he can’t do something anymore. Every time he coughs or wheezes or can’t catch his breath. Every time we have to sleep in shifts so someone can make sure he’s breathing ok. Every time he searches the internet for more clues to his life. Every inch he gets closer to finding out one day that …. well, he’s going to find out one day, and I’m going to have to comfort him. I don’t have any magic words. I don’t think I’ll have any words at all at that moment. Just a broken heart.

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