I don’t like to be that person who immediately jumps to the mindset of “why me” when something less than fortunate happens. I’m a take the bull-by-the-horns kind of girl and I expect my kids to be too. We are fighters, we take what’s given to us and make the best of it. Brooding about a situation isn’t going to change it; it’s just going to tear down any peace our mind might have had and put us in a lesser place. Not for me. But since Carter’s diagnosis, that simple little question has resounded in my head incessantly. Not in an “I need pity” sort of way, but just this nagging feeling like there is a REASON for all of this. There is a reason it is MY infant with this super rare form of diabetes. There are so many questions surrounding his diagnosis and so far we can’t even get the “simple” answer of what side of the family the genetic mutation came from. And this all just keeps my mind questioning WHY us?! What are we supposed to do with this diagnosis to help the rest of the world? Do we need to spread awareness, raise money for further research on his type of diabetes? Is knowledge about Carter’s type of diabetes going to save another infant’s life in the future? What WILL Carter’s diagnosis do for people in the future and what can we as his family do to make the world a different place because of this rare disease?
I’m blogging about our life. Does it make a lot of sense? Not yet (my life or the blog!) But maybe one day we can get our names out on Google and allow a parent to come across my blog about Carter’s first symptoms and give a little more thought to their own child’s current situation. Maybe we can save just ONE child from going into DKA because said parent saw our blog post about the night that Carter almost died. A long term goal of mine, and I don’t even know how or where to begin with this, is to make it routine to check blood sugar at routine well-child exams. Even the morning of November 1, 2017, when Carter went into his pediatrician’s office, his blood was never checked. A quick poke in the heel or toe- a brief and super fleeting moment of pain- could have saved us the entire traumatic day spent in two different hospitals guessing at Carter’s needs. Even at the first hospital Carter went to that day, his blood sugar was only checked as an “afterthought” by the doctor and only because the nurses had gotten an extra vial of blood and he just thought it couldn’t hurt. But something so simple could be made routine and potentially save a life or make the difference in treating a child for prediabetes versus something different.
We will find the “why us” sometime in life; that I am sure of. We absolutely have a reason for being the family of an infant with this super rare disease. I’ll keep blogging and probing to make blood glucose checks routine in well-child exams. I’ll keep learning to crochet to eventually sell homemade baby blankets to raise money for research on Carter’s Neonatal Monogenic Diabetes. I won’t stop until we have answers, and hopefully even a cure.