Don’t Bring Me Down

Day 4 of Diabetes Blog Week and the topic is What Brings Me Down.

This one is really hard for me. What brings me down is that my daughter has type 1 diabetes too. I was diagnosed at age 10. She was diagnosed at age 5. Ironically, our diagnosis dates are within a week of each other. I was diagnosed on my 10th birthday, December 2, 1977 (yeah, my actual birthday.) My daughter on December 6, 2010. Weird, huh?

I had read that my being 35, which I was for my first son, or over gave my children the same chance as the general population for developing type 1 diabetes – with me having type 1 and not their father. That was a cool thing to hear because risks of everything else out there increased at that age and over! Don’t quote me on that statistic though, as all these years later I don’t recall where I read it or in what context, but I was going with it at the time! I was healthy and did everything “right” I could to ensure my kids would have the best shot at not getting T1 (pun intended.)

I somehow missed out on the TRIGR trial (www.trigr.org if you’d like to read more about it), but I did breastfeed all three of my children to 15 months of age and only used Nutramigen formula as a supplement, which was rare. I was not in the trial, but kind of did my own version of it in an attempt to give my kids a leg up on the risks.

The twins about one month old and last year on their 11th birthday – my daughter’s insulin pump in that pouch she wears.

And this is where I get down. I felt like I did everything humanly possible to prevent my children from getting type 1 diabetes, but my daughter got it anyway and I have beaten myself up for that more than I could tell you. I felt it was my fault and replayed in my head over and over again everything I did while pregnant to see what I could have done better or could have avoided.

I know it’s not my fault though, logically. Most people with type 1 diabetic children do not have it themselves. A point to prove that is my daughter’s twin brother who does not have type 1, which is a bit fascinating if environmental elements are as big a factor in the start of this disease as we think. They were both exposed to exactly the same environment – internally and externally – from what I ate and drank to what was in the air around me to my own T1 management during pregnancy. They experienced and were exposed to the exact same things. After they were born, the same could be said. They ate the same things, they slept in the same crib, they were always together for at least their first year of life. So, what the hell happened?!

Watching my daughter have to deal with this disease and everything that goes along with it is what brings me down. When she was younger, in the midst of ongoing highs that required yet another infusion site change for her pump, she wailed, “Why would the universe allow such a cruel thing as diabetes?!”

Yeah, why?

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Stacey Rose
Stacey Rose is a type 1 diabetic mom of 3 (one of whom also has type 1). She is writer, runner, and music lover. She lives in Massachusetts and travels to LA frequently.

2 thoughts on “Don’t Bring Me Down

  1. I think it's so interesting to hear about twins where one has it and one doesn't because, like you said, their environmental factors are exactly the same! I'm sorry that your daughter has it. Like you, I am trying to breastfeed my babies so that I can lower their risk of T1 but you just never know!

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