I’ve thought long and hard about writing this. For years I’ve struggled with the right words – not so becoming of a writer, but understandable when you realize it’s from a mother’s perspective of an “invisible illness” that gets so misconstrued by the public, thanks to media. I’m sick of how my daughter has to struggle just to live a normal life everyday, and as a parent, I’m sick of other Type 1 Diabetic parents not understanding what she, or I, go through – because my daughter’s T1D is different. It isn’t managed easily with a small amount of Lantus and a nice even amount of Novolog. She has a high tolerance to insulin. Insulin is like water to her veins. She takes enough to put a mule into insulin shock, just to be in the 100 range.
The average child her age needs 6 units of Lantus a day, and they usually need 4-5 units of Novolog after every meal. Their formula is simple. My daughters requires 24 units of Lantus a day, and between 12 and 16 units of Novolog at every meal, and 6 to 10 units between meals – totaling about 50 units of Novolog a day. And that is everyday. That doesn’t include times when she needs more, due to illness, healing after a playground injury, stressing out due to schoolwork, or the worst of all evils – puberty.
It’s been 9 years since her diagnosis (what I have called D-day), and she’s not even a teenager yet. I’m getting scared, because she just turned 12, and I’ve seen way to many kids die of this in their teens – and they didn’t even have the double whammy of high insulin tolerance. Since she was a toddling, three year old, barely out of her pull-ups and able to speak a full sentence, she has been a pin cushion for needle pricks, blood sugar tests, and a lab rat to her endocrinologist and her parents, as we have tried desperately to find out what her exact needs were, only to have them change right when the perfect formula was found. She has fought back acute retinopathy once, acute cellulitis in her feet twice, and she has almost died five times – five times!!!
The philosopher in me wants to know why she has to live with this.
The scientist in me wants to know how she will live with this to see a full life.
The politician in me wants to throttle my Senators and Congresspersons until they convince my President to donate billions to research.
The mother in me wants to make a deal with God, before it’s too late.
I do not want my daughter to be the reason for a blue candle vigil.
It's Not What You Know... 
So, as a “daughter” who is also “different,” it does no good to compare her to “textbook diabetics” as I put it. I’ve had T1 for 30+ years. My parents were SUPER involved in my care, as it sounds like you are. So I wouldn’t stress yourself out about why she isn’t a statistic. She is who she is and you will all do the best thing for her to make her sugars even out. (Though, an insulin pump helped me immensely. Beat the 3 insulin cocktail I was on in college.)
It’s always nice to talk to an adult T1. My mother is T1 also (it skipped over me, but I ended up with T2 in my 40’s). Mom is 63 now (dx’ed at age 10), but hers is “textbook” and she uses a pump because her insurance covers the tubing/supplies. Mom has a 70 year old sister with T1 (also dx’ed when she was 10) who is more like my daughter, my aunt has a very aggressive two-insulin regimen, and just like my daughter, my aunt can’t even eat plain lettuce without needing insulin (she is also MDI due to insurance/money). I’m sure my daughter will end up pumping one day. It’s only a matter of insurance/money. If she wasn’t taking Lantus, and she had to rely entirely on Novolog 24/7 for control, I could see her using an entire 300 cc cartridge in maybe 2 days.
You’re right, I shouldn’t stress about her D not being the sweet, kind, typical, textbook that follows the rules. I usually get over the fact that nobody has a CLUE what I’m talking about, but for some reason….not this time. I’m glad you spoke up, its nice to know that someone out there has lived it, and “beat the teens”.