Our first-born daughter, Coral, was diagnosed with type 1 diabetes as a toddler, surviving diabetic ketoacidosis (DKA) several years ago when we were living back home on Oahu, Hawaii. I quit my job as a personal stylist to take care of her 24/7/365. My husband sought a more sustainable job in Los Angeles as an artificial intelligence software engineer, leaving his position as a medical professor and researcher at University of Hawaii. We have been managing her chronic autoimmune disease almost entirely on our own ever since.
(We did find and train a wonderful babysitter, who was going to nursing school, to help us with D-duties and with our younger daughter, Kaila. But then the pandemic hit in 2020, and we had to self-isolate — back to just us.)
It is so very necessary for any parent to get a much-needed break, time to themselves, to just not think about diabetes for a little while. But if my husband says he’s going to “take over tonight,” I still wake up to CGM (continuous glucose monitor) alerts unless I’m absolutely exhausted. If he takes the girls for a bike ride just around the neighborhood, I worry he might not notice Coral’s BG (blood glucose) dropping and be able to prevent a severe hypo while she’s away from me — especially if he’s distracted with, say, a group of anti-maskers nearby, or with our rambunctious little Kaila. If he doesn’t log a finger prick reading in our blood sugar app during CGM sensor errors, I won’t know what her last BG was.
He’s way more calculated and logical than I am due to his background and education in physics. I rely on my keen intuition and knowledge of Coral’s diabetes — how she processes various carbs or how quickly her BG will drop within 15 minutes after physical activity. Coral is still hypo-unaware and does not exhibit obvious seizures when her BG is less than 50 mg/dL. Having a properly working CGM is key to us being able to enjoy our very rare quality time together as a married couple with a bit less anxiety of Coral’s BG levels. But when those fast drops happen, especially during a CGM sensor error, we have to stay vigilant with finger pokes so she doesn’t develop severe hypoglycemia. That’s nearly happened a few times in the past three months.
Despite all the many less-talked-about challenges parents may face when managing their child’s disease, I am forever grateful to have a loving, supportive, and passionate husband to help me with D-duties. Sharing diabetes care lets me spend more quality time with my youngest daughter, Kaila. It allows me a few hours to take a break after I’m burnt out from managing blood sugar nonstop. I can give myself a manicure or pedicure, catch up on my blog and my online shop, or do my HIIT workouts. Or, better yet, do nothing at all for an hour or two!
It also means Daddy gets more practice with diabetes care — things like timing a bolus before Coral eats anything with carbs, and timing treatment with the right amount of carbs before she goes low, and being more aware of how fast her BG levels can drop after exercise or a warm bath. He still needs to get more comfortable with doing CGM and pump site changes as well — his hand remains shaky before applying either to her once baby-soft skin. It’s understandable, so I give him lots of grace. However, I did insist on training him to do it about a month before Kaila was born.
To minimize room for error, it’s so important for both of us to communicate with each other effectively. We’ve found various ways to make this T1D life work for us — for example, he recently started texting me her finger-stick BG levels from downstairs when I’m upstairs, and this has worked out wonderfully so far.
We know how to obtain good glucose control for our now 6-year-old daughter and set realistic goals for ourselves, aiming to crush them. We don’t compare our management style to anyone else’s, because it’s irrelevant, and we make sure not to pass judgment on others. We can only do our very best and keep striving to thrive.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.