I think back to a year ago- I was pregnant, had just found out that Baby Baker was a boy, and was anxious and excited for the school year to be over. I am trying to remember what I thought my life was going to look like with Grayson- certainly I had no idea the rollercoaster of parenthood would have the twists and turns that ours does.
We saw another specialist today- a pediatric endocrinologist. And I’m sitting here thinking about the fact that for me, it wasn’t odd, or strange, to be going to an endocrinologist with my almost 7 month old. For me, it wasn’t weird that we saw a neurologist last week and had an EEG on Monday. I’ve gotten used to wheeling Grayson into doctors’ offices, handing over my credit card and insurance card, and filling out paperwork as fast as I possibly can before he starts crying to get out of his carseat. I’m no longer apologetic when my baby is crying in waiting rooms, or while doctors are explaining complicated brain functions to me. I just bounce and shush G while learning as much as I can about the functions of the pituitary gland. My new normal is scheduling playdates around therapy sessions and making doctors’ appointments during naptime.
I thought I would be relieved to hear a doctor give a “diagnosis” but I wasn’t. I think to me “diagnosis” means we know what’s wrong, we know if we can fix it and we know what the future holds. Nope, nope, nope. Septo Optic Dysplasia and Grayson Baker Syndrome (as diagnosed by his neurologist) both point to the same road- a road that isn’t very well lit, and we have no idea how straight and scenic, or windy and trecherous it is.
So I’m leaning on faith- faith that God knows what he’s doing and he has an amazing plan for my little dude. Faith that even though my new normal isn’t “normal”, it’s filled with love, hugs, kisses, and days spent with this amazing little baby who discovered today that his feet are delicious.