Being a T1D Caregiver

By Jennifer Griffin

You spend months wishing your baby would sleep through the night and suddenly you wake up one morning fully rested and you realize it happened! You rush into your baby’s room to see her happy and smiling, arms up to be picked up and life gets just a little better. Sure, there’s still diapers to change and messy fingers to clean, but finally you get a full night’s rest every night. (OK maybe not every night but more than before).

2017-cdf-bdc-8x-441Then the doctor gives you the diagnosis – Type 1 Diabetes. At first you’re getting up to check blood sugars because the doctor says so. Then maybe you’re getting up because you’re just afraid – afraid that this unknown, uncontrollable force is going to send your baby into a coma. Then one morning you just wake up and realize you slept through. You missed the 3 am check. Again you rush into her room and find her number is 56, low enough to worry, and you feel the flush of guilt wash over you. How could you have slept? What could have happened? All of the negative side effects flood your mind from training and you vow never to sleep again.

WAIT?? WHAT?? That’s ridiculous! But we’ve all been there, the forgotten Lantus, the over corrected low, the day you’re caught at the diabetes party with no glucose tabs (that was the lowest my daughter has ever been – 25). Life with T1D is a constant roller coaster of blood sugar and emotions. So, how do you essentially replace your child’s pancreas without becoming a casualty yourself?

  1. Build a good team – Train grandma, grandpa, aunties, uncles, neighbors, sitters, friends. Train everyone who’s willing to learn so that when you hit the wall (and you will hit the wall) you have a list of people to call and rely on for a nap or an overnight. Six months after my daughter’s diagnosis my husband and I had to go to a conference in Las Vegas and I had to leave my baby girl with my sister for the first time. It was horrible on me! I left her five pages of instructions with dosing, feeding, sleeping, all of it. I’m sure she thought I was crazy, but it was all so new.
  2. 2017-cdf-bdc-8x-458Create an instruction packet – Speaking of five pages of instructions, create a document in your computer that can easily be updated and printed when you need it. Include doctor phone numbers, emergency numbers, dosing instructions, pump settings, tips with suggested snacks for your kid. Include anything someone might need to know to take care of your child. This way you can get everything on paper before you actually need it. I can’t tell you how many times this has come in handy over the last decade.
  3. Build in personal time – Especially if your diabetes kid is still at home, it’s important to not let diabetes take over your life. Sign up for a massage club, join a hobby group, start a bowling league or even find a way to give back. Use your team to set aside time. Eat food and DON’T count the carbs.
  4. Enjoy the perks – Now if you’re new to this, I know it’s hard to see the perks. My daughter has had multiple opportunities to develop public speaking skills, meet wonderful people, and educate people on her condition. We’ve gone swimming with manatees, met the Colorado Avalanche, and participated in ground breaking research in the Artificial Pancreas project. She is smarter, stronger and more empathetic than most 13 year olds I know and I’m proud of how she handles her condition.

The resounding theme in our home is this: Natalie has diabetes, diabetes does NOT have her! And it doesn’t have me either.

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