From her mom, Christie:
Our daughter, Odette, was diagnosed at 14 months old in severe DKA. She had no symptoms other than extreme thirst and vomiting. She was then misdiagnosed by a local doctor. Hours later, she was panting from the acid buildup (and still vomiting), so we took her to our local ER. They didn’t know what was wrong and by then she was severely dehydrated, despite the recommended Pedialyte (sugar!), so they called for an ambulance to take us to the children’s hospital. During the hour long drive, I was trying to keep her awake, despite it being the middle of the night. A mother’s instincts, I guess.
As soon as they had her in a room, they told us the news: “Odette has Type 1 Diabetes, she’s very ill and we’ll do what we can”. Those words still give me shivers to this day. They put an IV in her neck and her arm, I helped hold her down while they put a catheter in, and I couldn’t breastfeed her for 48 hours while she was in PICU. Her blood glucose and acidity were so high that they had to bring her blood glucose down very slowly, as they feared it could cause a cerebral edema. They had told me that if she hadn’t stayed awake, she likely would have gone into a coma. They kept her in the hospital for an additional 5 days, where I slept on a mattress on the floor. The one afternoon that they let us go out for (Mother’s Day) lunch and to play in the hospital children’s room, she contracted a stomach bug! All of her first 4 molars decided to come through while we were in the hospital too! It was a brutal week.
They sent us home for a week, where we called in every time she ate and they told us how much diluted insulin to give her, and then they had us back in to get her on an insulin pump.
The first 6 months was extremely hard, holding our screaming baby down while we changed her sites, up through most nights monitoring her BG, reading books like “When a Child has Diabetes” and “Think Like A Pancreas,” figuring out what actually worked with an infant with T1D (not the standard 15 grams of carbs for a low treatment that we’d been told!), finding tools and products to make it all easier, etc. I joined Facebook groups for support, ordered a JDRF Bag of Hope, and a month after diagnosis, we went to our 1st (of 10 now) JDRF Walk to Cure Diabetes.
We all adjusted (we continually do) and we got Odette a continuous glucose monitor after a year which was both scary (to see what her numbers did) and amazing (quite literally life-saving).
We did a cross-country move, away from our family and friends, a year and a half later so that I could stay home with her full-time to manage her diabetes.
I became a JDRF mentor in 2015, and Odette was a JDRF Ambassador for a few years as well.
Myself and another mom started a local Facebook group for parents of children with Type 1 in 2017, which now has 364 members. I support the group with reference and advocacy files, and posts.
We have done the JDRF Walk 12 times in 10 years as we have a yearly Walk team in 2 different locations! My mother-in-law heads up our biggest Walk team in Halifax, Nova Scotia, Canada with a bunch of our extended family. 🥰
Our family helped support new families in organizing and running the New Families Tent at the 2023 JDRF Walk as well.
The technology available has changed a lot over these last 10 years. We now have our daughter on a loop which has also improved her/our control – I’ve finally had weeks where I have been able to sleep full nights! With an increased desire for independence, Odette is now taking on more of her own testing, weighing of food, bolusing, correcting, etc, which is good for her development and our respite.
We are incredibly proud of our girl. We all have a love-hate relationship with T1D and experience burnout and grief in sporadic waves. But we’ve also found gratitude for this chronic disease in the strength that we’ve found, resiliency as a family, and in wonderful friendships created.
We are optimistic that there will be a viable cure in our daughter’s lifetime. 💙
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