Inevitable

The hardest part of living with Duchenne at least for me is the inevitable. It's the statistics that run through my head and the constant knowledge that no one has ever won this war.
Where do I find hope there? How do I find goodness and light and how do I make sure my kids life is as happy as possible for as long as possible?

I wish had the answers.  I say all the time it would be so helpful if when they handed out diagnosis they also handed out instruction booklets. I mean keep them active but not too active for as long as possible and enjoy what you have isn't exactly an instruction.

The last few months I've felt numb. Like I can't cry and I can't express what I'm feeling. I'm helpless and hopeless. He is 9 now. Most boys with duchenne lose the use of their legs between 10 and 12. That's not even the future anymore. I'm not ready for this, we haven't seen the grand canyon yet. I mean I know we can still go on vacation at least for awhile but we were supposed to see the Grand Canyon before the wheelchair. I wish we had unlimited funds and we could just vacation all the time.

I'm so afraid we won't get to the grand canyon or touch the Atlantic and Pacific oceans. That we won't go to New York City or Gettysburg or eat a lobster in Maine. Suddenly time is moving to fast and I'm in a panic. I'm not supposed to panic damn it. I have one job, keeping my shit together.

He is afraid his legs will just stop working one day and I tell him it won't be that way but I mean there will be a day where they just won't be strong enough to stand on.  I mean it won't be an overnight thing but then 5 to 9 seemingly happened overnight.  Duchenne has changed him. His face is rounder, the steroids have made him on edge all the time, he gets picked last in gym and at recess. He wears braces on his legs with special shoes and its hard to buy him clothes. We can't pretend we are just like everyone else anymore.

I don't want to lose Robbie. I don't want him to go to a "better place," I hate grieving what I still have. I hate being angry. I hate being sad. Sometimes I hate feeling happy.

Shelby and I feel so alone sometimes. It's like we are in a room full of family and everyone is laughing and happy and we are jealous. Sometimes I think of my parents and the joy they must have felt watching their children grow and knowing it would keep going.  I have to watch all these things he has worked so hard to achieve slowly go away. The walking, the perfect penmanship, the xbox games, the ability to eat, the hugging, until he loses the ability to breath, til his heart cannot continue to beat.

I'm sorry I know that's morbid but that doesn't change it's truthiness. I know for all of us the future isn't a guarantee but it's at least a possibility.  The inevitable end of duchenne is a guarantee at least until we have a medical breakthrough. Sometimes that is really hard to accept