I don’t know how to write about this. I didn’t think I would try, so soon, but it seems I am avoiding coming face-to-face with my feelings surrounding it, and writing has always been a way to feel.
I am scared of the life Kiran will have. I am scared I am not equipped to be his caregiver. I am scared that all the therapies and all the prayers and all the hours of work and heart and sweat and tears will not pay off in the way I hoped they would.
We learned more on Thursday, when we were in Iowa City meeting with Kiran’s genetic ophthalmologist.
My fears – my motherly intuition – I am sad to say – were spot on. I mentioned his brain scan was in line with his global developmental delays. This is because his brain is small. His cerebrum, his cerebellum, his brainstem – his entire brain – is smaller than it should be. It is all there – thank goodness – but it doesn’t fill up his “cranial cavity” the way it should. There are spaces and fluid where brain should be.
This is an anatomical fact. We do not know, at this time, without further diagnoses, how this will translate into life function. We do know he is globally delayed – we do know he is currently making progress in almost every area, slowly. We don’t know how much progress he will make. We were told he is not likely to ever have a normal development – he will not ever catch up with his peers. Some level of permanent disability – permanent difference – permanent challenge – permanent….
His entire brain is small. Everything is affected. Global developmental delays.
We have an answer, yet we don’t really have an answer. We know more, but we still know so little.
And I am scared.
Because so many of my fears I could brush aside and talk myself out of before knowing this.
What if he never walks? Beyond that, what if he never masters any sort of independent mobility?
What if he never talks? What if I never, ever get to hear my little boy say “Mama, I love you”?
Oh, there. I found my feelings.