Caring for 2 T1D Boys
Editor’s Note: Megan was a member of Beyond Type Run‘s 2018 TCS New York City Marathon Team sponsored by Dexcom and Insulet, makers of the tubeless Omnipod Insulin Management System. Learn more about the 2019 Beyond Type Run team here.
Caring for three people with type 1 diabetes (T1D) is a really huge part of my day-to-day life. The 24/7 monitoring, the overnight blood sugar tests, the fighting insurance companies, the doctor’s appointments, the constant worry is all pretty consuming. But, I am beyond blessed that I’m able to stay home with my boys, so thankfully, that has made it much easier. I also have the world’s greatest husband. He is amazing and I couldn’t do any of it without him. He has been with me since we were 17, so he was there for my diabetes burnout in college, my subsequent hospitalization from said diabetes burnout, me getting my first pump, my first continuous glucose monitor (CGM), etc. Those experiences, along with all the tools we are so lucky to have, help make it much more manageable.
We currently use three Dexcom CGMs, three iPads/iPhones to be able to remotely monitor the CGMs, five meters (two in the boys’ bedroom for overnight testing, two with me for all other times of day testing and one for me), three Medtronic pumps and the diabetes supplies? You can’t imagine a greater stockpile! Everyone has different color coded dexs, testers and pumps. In general, we have three pump site changes every other day, we all test together every three hours, we all calibrate together, we bolus together, we change the Dex together, etc.
My twins just turned four and have become the greatest testers. They help each other if one can’t squeeze enough blood out, they help each other if they spill all the strips on the floor, they grab applesauce pouches for each other if they’re low, etc. They are each other’s best supporters, just as I had hoped for at their diagnosis.
But, more than all the physical stuff we have and do, the difficulty is really going beyond caring for the immediate stuff. Testing, giving the applesauce pouch and turning on a temp basal is the least of the worries. The harder part is figuring out what to do about it so it doesn’t happen again—having time and focus to dig into the patterns and what is really going on. The harder part is also knowing how much to tell others. We have discovered that telling too much scares people and might make things (like being welcome in a private preschool, a church Sunday school, or receiving birthday party or playdate invites) less likely. But, if we tell too little, we could be risking their safety.
So far, we haven’t left our twins for more than a couple hours, except one night when I was in the hospital giving birth to their baby brother. We really struggle with this part. Leaving our boys’ health in someone else’s hands is eminent, but we are trying to hold off as long as we can. We have come across so many school horror stories, so many misinformed people making hurtful comments. We have even come across comments from friends, family and the media that make the boys feel sad.
It is usually the misinformed comments about eating too much sugar or a kid’s movie that references getting diabetes from eating something. We want them to be able to understand the disease before they have a chance for uneducated people to make them confused or feel badly about it. It’s a big deal to hand them over to anyone else. We are currently trying three-year-old pre-K for two hours, twice a week. They absolutely love the social fun, but I have been at their school so often to fix pulled out pump sites, to give applesauce pouches for a low, to fix the Wi-Fi hookup to the twins’ iPad, etc. I wish I could just take two hours and say, “they are in good hands. Everything will be fine.” But, so far I cannot.
And it’s not because they aren’t in capable hands. It’s just that their diabetes is so different than mine. It is my main focus and worry. Until you see your 1-year-old have a seizure from low blood sugar (that was perfectly fine blood sugar less than 40 minutes ago when you tested before his nap), I’m not sure I can explain that all-consuming fear. Things happen so much faster. The twins don’t really feel their lows or highs yet. I am hopeful that once they know what those feelings are and can communicate them more, it will be so much better.
I do not want to be a hovering parent. I don’t want to be the parent at school all the time. My parents were never like that to me. My schools and teachers weren’t even aware, most of the time, that I had T1D. I always preferred to let people know once I had felt like I showed them I was just like them. I wanted everyone to see that T1D wouldn’t get in the way or be a problem. I could still be on the high school swim team. I could still do everything they could do—eat whatever they were eating, without any special treatment. Diabetes never defined me or stopped me from anything. I cannot let that be the case for my boys.
But, when they are so little, I think it is a little different. They need all of our support so much more. We have always kept my oldest boy (non-T1D) very involved in the twins’ care. He has always read the numbers on the boys’ testers for us and will say if it’s a high or low number. He knows if his brothers are extra cuddly or sleepy that he should grab mom and let her know. He knows what T1D is and will tell anyone who will listen about it every single Friday, when he wears either his “Team Lincoln & Leland JDRF Walk” shirt or his “On Friday’s We Wear Blue” shirt. He even wanted to be front and center in the awareness video we made last year. He has never shown any jealousy or annoyance whatsoever at having to wait to carb count or taking the time to stop and test or anything like that. He is such a great big brother.
Motherhood, since my twins’ diagnosis, has changed in many ways. I now place so much more emphasis on what we are all eating, how active we are, how diligent I am on all my T1D care. I have two little boys looking to me and I will forever be their gauge. If I was a slacker in my care and then I ended up with complications down the road, I could have a direct impact on how they choose to live their lives and care for their T1D. If I take the best care of myself that I can, and continue doing really well with no complications, no visible downsides to having T1D other than the inconvenience, then I think that shows them they can do anything they want to do in their lives. (And do it better than most people, because they have to choose to be responsible, empathetic and diligent in their lives.)
I have also become involved in the diabetes community. I feel like showing them the importance of having a community of support will help them down the road. I also just finished a half marathon and am now focusing on my first full marathon. Running is also a reminder to me, each day, how I can do anything I set my mind to. It is physically the most difficult thing I do and throwing diabetes in there is such a great challenge. I love trying to outdo myself and I hope to be the example for my boys that they can do and be anything they choose to be.
Learn about Megan’s pregnancy HERE.
To learn more about the 2019 TCS New York City Marathon Beyond Type Run team click here.