I am an advocate for awareness and inclusivity. Just coming out of heart month in February, I spread awareness for Kiran’s congenital heart defect daily. His CHD is something I have fully embraced as part of who Kiran is, and I am vocal about it.
I realized, when a friend sent me something pertaining to one of Kiran’s brain abnormalities, the same cannot be said for that part of Kiran.
The reasons are plentiful. Kiran’s heart defect is something I found out at 22 weeks pregnant. I had time before he even arrived on the scene to learn and get comfortable with that. I am in a great support group with other heart families who know, as it is related to CHD, the path I’ve walked. With his heart defect, there was a clear plan in place. Surgical procedures outlined – there was knowledge and a sense of where he needed to go with it.
The brain abnormalities simply aren’t that easy. Though they do not have the same potentially life-threatening outcome the heart stuff has, they do alter his daily existence far more. At least in the last few years. I didn’t find out, with certainty, about Kiran’s special brain until May of 2018. I haven’t even been sitting with it for a year yet. I haven’t been able to connect or plug in with other families – nor do I even really know of any – that have similar brain stuff. There is no clear plan. Not only is there nothing to be done about Kiran’s brain, but no doctor can even tell me what exactly it will mean for Kiran.
Limbo is a place in which I have always felt uncomfortable. Always. And limbo is a place in which Kiran forces me to live, every day. I know he will not be a typically developing child, but I have no idea at what point his skills will plateau.
It’s a really hard place, for me. And I am in the headspace, now, that I know I need to sit with it for awhile. Grieve, for awhile. Then, acceptance will come. It always does.