It was July 23rd 2017. A nurse handed me a 15 month old baby. She looked just like my baby. She talked just like my baby. Something was different. This was a BRAND NEW baby. I didn’t know how to take care of this baby. Everything had changed. Everything was different.
From the moment that they yelled out that my baby had type one diabetes, I didn’t care. She was awesome. Diabetes or not this kid was perfect.
After a week long stint in a pediatric ICU it was now my turn to figure out how to keep my child alive. This new baby came with accessories like no tomorrow. Walking out of the pharmacy for the first time looked like me walking out of Victoria Secret’s semi annual sale.
Overnight, I had to become an expert at injecting hormones into a tiny person that would die if I injected too much. It was like that newborn parent feeling you get when you wake up in the middle of the night and you think that you left the baby on your chest, but it isn’t there because you put it in it’s own bed before you fell asleep … except it was ALL the time.
It was laundry, diabetes, breakfast, diabetes, work, diabetes, shower, diabetes, snacks, diabetes, phone calls, diabetes, diabetes, diabetes, diabetes. I was advocating for her on the phone with insurance companies, specialists, doctors and medical equipment companies at least three hours a day. I even got 4 land line phones for all around the house to make all my time on the phone easier and so 911 would come to the house asap if needed.
Things got slightly easier and I was keeping her alive like a champ. She was always happy. However, keeping her alive wasn’t enough. No matter how close I got with her doctor; chatting until 10 pm on the land line (I inspired her to get one too, btw) and making constant changes to her dosing, diabetes was still weighing on me. I mean that literally! It felt like I was shackled and dragging a million pounds behind me everywhere I went. I had the constant thought that things weren’t as good as I wanted them to be. I worried about the long term effects of high blood sugars. It is a fact that high blood sugars in children before puberty creates no issue really what so ever in the long term. It was also a fact that my child was doing extremely well for her age. It still weighed on me.
I would wake up in pain, if I ever even went to sleep. I had cortisol running through my veins where blood used to be. I was on the back burner and it was where I belonged. I was doing every single thing I could. My child was alive and so happy and doing everything any kid her age was. I started to fall into a fog. Every single time I looked at a blood sugar or had an appointment with one of her doctors, it was like I was in the backseat, a complete and total passenger in my own life. The doctors told me I was doing great. I said, “thanks”. I was tired. I was dragging ass. I didn’t think it was good enough and I wanted it to be better. I knew that I had to keep learning, keep reading, and keep alert, but all I wanted to do was crawl into a hole.
I was no longer looking forward to those two hour phone calls with her doctor. Not that I really ever “looked forward” to them, but it used to feel like they were helpful and I could see results in the changes we decided to make. The changes started to become so miniscule that they were barely worth the phone call. I felt like we were going around in circles, not a downward spiral, instead, a hamster wheel that I couldn’t escape.
I decided I would stop looking at her blood sugar as much as had been. It helped a little, but not enough. I was looking everywhere and anywhere that would take my head out of this endless battle with numbers, that really meant so little, but meant so much to me. I was becoming a self destructive, shell of a person and that back burner lit on fire.
One magical day I asked myself .. “Who the hell am I?” A failure? Hell no! “Someone who accepts “average” or “good” as enough?” No. It’s not enough! I decided no doctor and no God could help me fix my internal demons about diabetes and they certainly aren’t helping with her numbers anymore. It was all up to me and I know everything I need to know. I was scared before, but now I was ready! It was time for a miracle.
I self assigned diabetes to be about four things: MATH, timing, manipulation and nutrition. What do you know … those four things have always been my FAVORITE subjects. I picked up her pdm (insulin pump computer thingy) and made educated changes to her basal without any help from her doctor. I saw a change. I did it again. I saw even more of a change. I was finally in control, somewhat.
When we left that pediatric ICU almost a year ago they told me that it would take at least a year to acclimate to having a child with type one diabetes. I am still not acclimated but I AM challenged. I will not back away from a challenge that I have some control over.
Today we learned that my angel’s A1C is 7.2 which is down from 9.2 right after her diagnosis. I WILL make that number better every single time. Not for diabetes. Not for recognition. Not for me. I will get that number down every single time for that perfect baby because I owe her everything for sharing her life with me.