5 days since diagnosis

It’s been five days since our diagnosis, and I still can’t wrap my head around it. I can’t sleep. When I do sleep it’s not restful. And it’s not because I’m doing the 2 am BG checks, Brent is. I close my eyes and can’t go to sleep. The second I drift off I immediately begin dreaming of different numbers. Is he too high or too low? How do I treat it? I don’t have enough experience to draw on to make judgment calls. My short term memory is gone. I can’t make simple decisions like what to eat or wear, let alone decisions about how many units of insulin to give.

I’m irritable; I find I have little tolerance for anyone around me. I cry easily.  I have this overwhelming urge to sleep and then wake up and this all be just a bad dream.  Reality hits me at odd times. I was in a meeting with a family who had received a diagnosis of Autism for their adopted son nearly a year ago. We sat and talked about various strategies and how going through different stages with their son on the spectrum would be different than their experiences with the neurotypical child.  I was able to lose myself in talking about their child for about 10 minutes. Then, it hit me full force, like someone knocked the breath out of me by punching me in the stomach. “My son has diabetes. There is no cure. He will be dependent on insulin for the rest of his life, because his body will never produce insulin on its own.”

And that’s how it goes. He has a good BG level, I’m happy and feeling like I can handle things, he goes low, I panic. He goes high, I’m not sure what it means and doubt my decisions. I’m double checking my math, and then triple checking by having Brent check it for me.  I don’t want this new normal. I want my old life back.

I’m not responding to emails. I don’t want to schedule a girl’s night out with my closest friends, even though they check in on Blaine and ask if I want to get out. I don’t want to be away from him. I’m at basketball practice now with Aislin. Blaine had his first track practice this morning. He looked so precious. He wore a new lime green Puma shirt I had bought him a few weeks ago, one that I noticed looked bigger than it should have when he tried it on. This morning we measured his breakfast, counted carbs, packed a water bottle and bag of snacks, along with the now-standard bag of BG monitoring supplies.  He was ready to get to practice and looking forward to it. I was nervous. They told us before leaving the hospital that it would be like bringing home a newborn. At first we wouldn’t know what to do and we would doubt ourselves, but that it would get easier.

In my opinion, it’s more like bringing home a fragile newborn. One that was in the NICU and was only released after swallowing on its own and gaining enough weight. We are given knowledge and insulin, but not experience. That we will only get through time, trial and error, and living every day. Every parent is given the job of keeping their child alive and healthy. Now we are told we have a child with an autoimmune condition. A condition in which his body began attacking itself, and we are taxed with keeping him alive.

Its indescribable how that feels, the weight of it is crushing.