Dear Jakey,
I need to take the time to count my blessings. I know I can get all negative and worry about your weight or your night’s sleep (actually lack of) or your poop and can get a little obsessive. But the fact of the matter is I have lost count of how many people have told me you look so great this week. And by great, they really mean alert. You are awake. There was a point not too long ago where I was writing to Dr. Thiele begging her to help me help you because all I really want is you to be able to participate in your own life. And I think we are getting closer to this each day. The hardest part of being your mom is that sometimes, or actually a lot of times, it is about faking it. People comment about you being such a sound sleeper and I have to smile, nod and agree. Or people tell me how envious they are of you because you are asleep in the stroller – really how many more “what a life” comments can we take? But you my dear, are joining in – you are keeping those eyes wide open and you are using them to see and participate in the world around you. And I couldn’t be prouder.
Today alone you got three notes home from school – one from Beth about how great you did all day playing with ooblick, the light box and other toys. One from Nancy about how alert you were for the whole PT session. And one from Stephanie about how great you ate at school today – your first day eating without me there! I couldn’t be prouder! And then Dr. Kang was clearly excited as I think this was the first time you were ever awake for an appointment with her! And she noticed how hard you working to get your eyes to follow her. You are awesome. And it doesn’t even end there – Heather at the Mexican Connection had to stop and comment on how super awake you were. It makes me so happy that we got rid of that clobazam and brought you back to your own life. We are trying to get rid of some of those annoying seizures that have come back too but hope you are happy too – and that you will take some extra lip smacking, teeth grinding and twitching to be a part of it all. I can only pray that it means as much to you as it does to us. I am so lucky to be your mom and love you more every minute of every day.
Love,
Mommy