My 5 year old Diabetic child is a super hero

My 5 year old was diagnosed with type 1 Diabetes just this month and it has been an extreme rollercoaster of emotions for me personally since I also live with type 1 Diabetes.  I have had many moments of tears bursting out of my eyes, to yelling and screaming at no one in my empty house to humbling moments when my little girl puts on an extremely brave face and tries a shot in a completely new area because we need to widen her shot rotation areas and I am crying inside but wearing my brave mom face. 

This is every diabetic person's worst nightmare because we do not wish our disease on anyone and especially not our children.  As a Diabetic I know the battles she will have to face and I know how deadly insulin truly is. My friend, who was a Diabetic Champion and was seriously kicking the disease's butt, lost her life because of a freaking low blood sugar and was home alone at the time.  This was before all of us had Dexcom share available. 

A Dexcom CGM is a tool that is priceless in living with type 1 Diabetes and relying on insulin to keep you alive.  When my daughter was diagnosed at Iowa City Children's Hospital they actually did not have a Dexcom sample available to put her on, which blew my mind completely!  I'm told the hospital board has not yet approved to put their newly diagnosed patients on a dexcom and they also do not send people home with one.  I think my head almost spun off.  I told them when I take her home she will either be wearing my Dexcom transmitter or I will search within my friends who are T1D to find a spare.  I said I cannot believe you actually send kids home on insulin and NO DEXCOM?! There was no way I was putting her to bed the next day at home with no cgm.  No way in hell!  No way in hell I was going to even chance my little girl having a seizure because I didn't catch it with a finger poke.  You can't rely on a kid to know what a low feels like after 1 day of insulin.  She even went low in the hospital on just saline! Unreal.  

So we went home and I had a transmitter from a dear friend and a spare sensor from her as well.  She literally saved my sanity and almost all fears of a low seizure.  We are 13 days out from paperwork being sent in for insurance approval for her to be on her own Dexcom and just yesterday they, Solara, got their shit together.  While I was on the phone they asked me if our insurance required prior authorization and I told them yes so they submitted it yesterday.  14 days they expected us to go so far with NO CGM. Total insanity, this is what we diabetics have to deal with and face nonstop.  They, insurance companies, expect people to have their kids, all ages even BABIES, to be on insulin with no cgm!  It should be day 1 and you are on a cgm.  So far my receiver from 2018 is still working by some miracle of God.  I hope it hangs on until I get one for her. 

My daughter has been such a hero in my eyes because she has bravely taken all her shots, which she has to take Lantus once a day and Humalog for all the food she eats, finger pokes and 2 dexcom changes so far.  She has tried new places for insulin shots and waited for us to count carbs and weigh her food.  She has had to adjust the things she eats and some snacks have had to be made totally carb free. I have switched a lot of things over to lower carb and she is trying so hard to learn to deal with it. I went low carb many years ago so my kids have been use to me trying new low carb recipes.  It is much easier to manage this monster when you eat less carbs, or less simple sugar carbs.  It's going to be very difficult to make my very picky eater make that switch but I'm hopeful she will adjust. 

Diabetes has brought her down at times but she is mostly still her happy, bubbly, energetic and silly self.  I know 2 weeks after my t1d diagnosis at 19, I was not happy or bubbly.  I was pissed off at the world and that is a major understatement. Me and both of my brothers were diagnosed in one year! I have no idea how my mom did not lose her mind or sanity because I have felt very close to losing it all completely.  This kid is my hero and one hell of a brave one. Yesterday she told me she was going to be a Diabetes Doctor when she grows up.  She has been saying for a while she wants to be a doctor or a veterinarian so I know the drive is in her, she has all the persistence that I have plus more and if you know me, that kind of sounds scary, haha!  I know she will do some amazing things with her life.  It is my job to get her to adulthood now with no complications from this fricken disease.  

The fire in me to fight for a cure had been smothered a bit but now it is reignited. My faith still lies within Dr. Faustman and her BCG trials. She has patients who can go without insulin or they need only a tiny bit of insulin to have normal A1C readings. This may not reverse the disease all together but it sure the hell beats what we can do right now.  I plan on calling her lab tomorrow to see what I can do for me and my daughter and for what I can do to help raise funds for the trials. They are hoping to start pediatric trials soon, they got the green light from FDA to start trials.  So stay tuned, I am back and I am going to be louder than ever!