Yesterday, Gwendolyn had her preschool photo shoot. She took her class picture with all of her school friends and teachers. And then — just like all of the other kids — she excitedly took her posed solo shots sitting in her purple tumbleform chair in front of a cheesy faux windowsill setup 
She was so unbelievably proud. And I was so unbelievably proud of her. And it was wonderful. Gwendolyn loved it. And I loved it. Every second of it.
But I'd be lying if I didn't admit that it was a pretty emotional day for me. With Gwendolyn's SMA there are few, if any, trivial experiences in our lives. We live every day — every minute actually — acutely aware that there is a real possibility that it may be our last with Gwendolyn — that's the reality. We've come to learn that there are many things that we can't control with Gwendolyn's SMA, but we try and put those aside and instead stay focused on those things that we can. And we try and cherish everything. And I mean everything.
“Good mornings” have a much different meaning these days as do kisses goodnight. And that simple walk or that swing on the swings or those ducks in the pond or that fun dance song on the radio or that infrequent storm or that sunset or that impromptu family dance party are all uniquely special family experiences for us. And we hold on to every single one of them.
Three years ago when Gwendolyn was diagnosed with SMA, I thought making it to preschool (much less attending) was an impossibility. Just like her power chair. And a 5,000 mile RV adventure. And Disneyland. And Sea World. And snow sledding. And her first birthday. And her second. And her third. Given the grim statistics of an SMA diagnosis and our own experience living in the SMA world and seeing so many children taken much too soon by this brutal disease, I know we are unbelievably fortunate to even have the opportunity to experience something like preschool and a class picture with Gwendolyn. That's never lost on me and never will be. And while I don't know what tomorrow holds for Gwendolyn or if she'll be a part of next year's school picture, I know for a fact that simple experiences like this are what it's all about for Gwendolyn. Experiencing. Living. Being part of it. And savoring the small stuff (and some pretty big things as well).
Yesterday was a very special day for me. For us. I'm so proud of you Gwendolyn and I love you to pieces!
