Today you have been gone a month, but it seems like forever. I long to run my fingers through your crazy hair, hear your laugh, and receive your wet, open-mouth kisses. The day will come Baby, I know. But never soon enough.
Some great things happened today, because of you. Your aunt heard from representatives ready and willing to get to work on your bill to expand newborn screening. Jim Kelly's office called needing an address to send something he has donated for your benefit. Those are both huge things.
People at school are hard at work preparing for your benefit. I see you every time I look at them. It's so awesome, their love for you. It helps to keep me going.
I found this video of you when you were about 5 months old, before we started seeing your symptoms. You had just learned how to give raspberries. I watch as you fling your arms and see your chair bounce as you kick your legs. I realize that you are now able to do that again. And as much as I miss you I know we had to let you go. Now go run and play Little Man. We made some good progress today.
Forever Your Mom