Birthday

I found myself dreaming today about the 2 story craftsman house we used to plan to get. I remembered thinking about whether the cost of granite counters was justifiable. i remember vividly touring the models and going home and planning out the life we would have.  The 3 kids, the work from home job for Shelby, finishing school and getting a degree once our kids were is school full time. It was never grandiose. It was simple. I wanted a degree in history who knows what kind of career that would lead too but it was only a dream.

it's hard when dreams die. When life takes shape in a million ways you never saw coming. I never imagined our marriage would be this strong. That as much as I loved him at 20 it was nothing compared to my feelings at 35.  I didn't know how amazing and difficult it is to have more kids then hands. How proud and amazed you can be by these humans you made and how totally frustrated they can make you. 

I never thought we would change Michigan for Florida. That we would trade Florida for Georgia. It was in Georgia that we had the best of times and it was in Georgia that we were broken.  Ask Shelby or I and we will tell you that leaving home and starting over so far from our families was the best thing we ever did. It was hard and scary but twice we built a life for ourselves, Twice we started over and twice we survived. We depended so wholly on each other and we grew up, and we became stronger together.. 

The craftsman with the 4 bedrooms upstairs is never going to happen.  The college degree while tempting is just not worth the time away from my family.   My dreams aren't simple anymore. I want a cure or treatment for duchenne muscular dystrophy. I want my son to still be able to hug me 5 years from now. 

I don't know if it's really dreaming I do these days. Honestly my life occasionally feels like this horrible nightmare I should wake up from, but I don't.  I'm not the mom or wife I was all those years ago. In some ways that's good. I can communicate with my husband better. I don't white wash life for my kids, although its certainly tempting from time to time. I love harder and more honestly and I try, I try so hard to let go of old hurts even if if just so there's room for all the new hurts coming my way. It's not all good  I'm quick to anger and quick to dismiss.  I'm jealous when I don't want to be and crying when I should be smiling.

Today is my birthday, if you know me you know I'm worse then a 5 year old. I love Happy Birthday, cake, and balloons. This year doesn't feel celebratory. The duchenne community is scared. We've watched as clinical trial hopes have been dashed one by one.  We've heard emotional testimony from people we don't know yet somehow we do know. We all know how precious little time we have to save our sons.  I trust the FDA to make valid reasoned decisions, yet I fear they are making decisions based on old science and old testing.

For my birthday this year I hope the dream of this 35 year old to be hugged by her son at 40 doesn't die. i can live with out the craftsman, I can watch enough history documentaries to compensate for that degree, but i don't know if I can live w/o my child's hugs.