This blended family includes two children who have Type 1 Diabetes. But a strong partnership and an excellent support system have helped them thrive despite the challenges of the chronic illness.
On September 18, 2011 my son’s life changed forever. Marcus was diagnosed with Type 1 Diabetes (T1D) at the age of five. At the time I was a single, divorced mom with a child who was just diagnosed with a lifelong chronic illness that can be life-threatening if not cared for properly. I was scared. I knew a bit about it because I have a friend who has diabetes, but I didn’t feel like I knew enough to be able to manage it properly and on my own. The one thing I knew, but sort of wish that I didn’t, is that young diabetes sufferers are at an even higher risk for cardiac arrest, than other people who have the disease and this was just astonishing to me. Before Marcus was diagnosed, I didn’t even realize that there was a link between diabetes and cardiac arrest, but apparently there is, and he could be at risk of having one. I had to learn how I could manage this disease effectively and efficiently so that he would remain as healthy as possible. The learning curve to deal with diabetes is steep, and even on the best days, it can send you on an emotional roller coaster ride. As I said, I have a close friend who is diabetic so I knew a bit about the condition going into it. I knew about things like men’s diabetic socks which not many other moms would know so as challenging as it was, I wasn’t going into it completely blind.
Since Marcus was diagnosed, I met and married Tyson, whose son, Calix, was also diagnosed with T1D. His diagnosis has been a blessing in disguise because they’ve created a buddy system. They both have to wash, check and weigh out their food before meals. Tyson and I are a team and all changes with either boy’s diabetes care are discussed between us to make sure we are doing what is best for our kids. Now, our blended family has grown to four children ranging from 10 months to 14 years, which brings its own set of unique challenges.
When kids are newly diagnosed, the hospital gives you a paper logbook to record blood sugars. To me, that is an archaic system, since no one writes anything down anymore. I changed to tracking his numbers digitally so I could just send his father or doctor a screenshot of the graph and numbers. Now, we use CareLink, an application that comes with the Medtronic insulin pump that is attached to Marcus 24/7 with the Continuous Glucose Monitor (CGM) to track how his blood sugar fluctuates. The CGM takes a reading every 5 minutes and transmits the information to his insulin pump.
Things that are simple for most kids, like school and sports, can be a challenge for us. Not to mention growth spurts-those are really bad for their blood sugar numbers. School can be a challenge because we can’t be there to make sure the boys make the right call when it comes to how much insulin they get. School lunches are made the night before with everything weighed and measured and the carbohydrates written on an index card. The days of just letting them get outside and be active are gone. The boys have to check their blood sugar prior to starting any sport that is longer than 30 minutes and depending on their blood sugar, they may need to eat something before they begin. Around the 30-minute mark, the boys have to check their blood sugar and it requires them to get out of the pool, stop running or skiing. Fortunately though, with Marcus having the CGM, we can see the lows coming much faster than we could a few months ago when we didn’t have it.
Shortly after Marcus was diagnosed, I found an amazing support group online called the Diabetes Online Community (DOC). It is a group of people all around the world that either have diabetes themselves or have loved ones who have been diagnosed with the condition. It is a global sounding board for issues that you may have and also a place to celebrate the small achievements that come with managing T1D.
This year marks four years that Marcus has been living with diabetes and two years for Calix. I never thought that life would get back to normal after such a big change, but having great support can mean the difference between being helpful or hopeless. Tyson and I know what it is like to be the parent of a newly diagnosed child; I don’t think that feeling ever goes away. But I like to help others realize that the guilt they feel or the loss they have for their “old” life is normal. Diabetes is the same as walking-it takes time to learn but it is second nature after a while. It can be hard but we aren’t given anything that we can’t handle.
This is #1000families post number 87. Do you have a family story of your own to contribute to the 1,000 Families Project? Or do you know a family that might want to do so? Learn more about how the series got started and how to get involved here. You can find all of the #1000families posts here.