Just over 4 years ago our daughter Annabelle was diagnosed with type 1 diabetes. She was 4 years old. After Annabelle was released from the hospital we spent 2 intense days in training for what would become Annabelle’s (and our) new normal. On the way home from day 2 of training at CCMC, with several insulin injections under our belts I made a phone call to a dear friend and roommate from when I lived in Boston. My friend Heather is a type 1 diabetic. When she answered the phone I told her about Annabelle’s diagnosis and then I said, "I have just started to learn what you have been doing every day for 25 years to take care of yourself. The grace with which you have handled the rigors of type 1 diabetes is unbelievable." But what I was really thinking was that I was a bad friend. The hundreds of decisions Heather was making every day went virtually unnoticed by me. She never complained or asked me to help in any way and now I was learning first hand how difficult and unrelenting this disease is. It was mainly because of my relationship with Heather that I kept it together when Annabelle was diagnosed.
And then...two years ago today our oldest son, Jack was diagnosed as well. He was 8. I still can't even write or say this sentence without tears filling my eyes.
Type 1 diabetes has no cure. Our 2 children would both be dead by now without the invention of synthetic insulin in the 1920's. Even with major medical advances, Annabelle has a life expectancy 13 years shorter than a female without diabetes and Jack has a life expectancy 11 years shorter than males. The risks of blindness, kidney failure, amputations are acute but what I want to explain is that Jack and Annabelle's every day (and of course mine and my husbands) is a minefield of decision making.
Our kids wake up and immediately test their blood sugar with a prick on the finger (don't know how they will continue to get blood out of those little fingers as they are already calloused beyond belief) Then we decide what they will have for breakfast. If they are too high we have to go with an all protein breakfast - cue the groans all around - if not, we count and calculate the carbs and tell their insulin pumps to give them the corresponding amount of insulin. Off to school and the never ending mantra of... Don't forget your kit (the KIT is the bag that contains test strips, extra pods, fast acting sugar, a glucose tester, ketone strips etc..IT IS THEIR LIFELINE) And there are the constant questions and reminders...If you feel low tell the bus driver...Do you have sugar in your kit?...Don’t forget your kit...is your pod going to expire?...did you write the amount of carbs in your lunch box?...Don’t forget your kit... Did you take more insulin for that go-ghurt you had?...Do you have enough strips?...And DON'T FORGET YOUR KIT; even with all these reminders, we have had to retrieve kits late night from the bus transit station, Duffy School, restaurants, taxis, fairs, baseball fields, The Okemo base lodge, birthday parties etc...All these questions...all the time.
Then it’s off to school and thankfully we have an amazing nurse that helps take excellent care of them. But again blood sugar testing, insulin administering, low blood sugars that often mean missing recess or specials. And then the bus ride home. And then it’s after school snacks, sports and play dates which require a whole new set of considerations. We can watch our kids play baseball or field hockey and tell whether they are low or high based on their focus on the field. I bet I am the only mom in the crowd worried my son would rather have a low blood sugar on the pitcher’s mound than take a time out and eat the sugar in the back pocket of his baseball pants.
As someone managing 2 type 1 diabetics, the big short term fear is a low blood sugar. I don't know what a low blood sugar feels like but I sure know what it looks like. It looks like a normally happy kid just absolutely miserable. So frustrated and mad and sad that they don't have the ability to prick their own finger, and even the prospect of having candy isn’t enough to console them. I know that if you miss a low blood sugar and your kid doesn’t feel it or communicate it, that they can seize and possibly worse.
This year my kids were able to swim to the dock by themselves at the lake and as I am waving proudly to them from beach I realize Oh Shit! They are out on that dock with no sugar and swimming absolutely plummets blood sugar, so I jump in the lake and deliver gummy bears to my kids on the dock just in case. These are little things that we would all do for our children but it gives you an idea of how this disease creeps into everything.
And then there is night time, and this is the time of day that just makes all parents of T1D kids cringe. Even with the advent of continuous glucose monitors (which is an additional device that my children wear) that reads their blood sugar (with marginal accuracy) and alerts us (often) of fluctuations of blood sugar during the night. Parents of T1D kids sleep on average 1 hour less a night than parents with healthy children, and we have 2. There is so much to consider when going to bed with type 1 diabetes. When was your last meal, what did you eat and how active have you been? The fear of all parents is that your child will have a low blood sugar in the middle of the night, so we set alarms and test our kids periodically at 2:00 am and 5:00 am, and listen for those near constant alarms which more often than not are not even accurate. We get up and we test our kids in the middle of the night and hope that they are not low, because that means waking them up and forcing them to drink juice, that is if we can get them to cooperate and then to try and brush their teeth because we don’t want cavities either.
And Then It’s Morning.
And We Do It All Over Again,
There are NO Rest Days with Type 1 Diabetes
This summer, I got to spend time with my girlfriend Heather who has been T1D for 25 years and her 2 kids. I know what it's like to take care of kids with T1D but was unaware of the demands of being an adult and a mother and also type 1. There are so many more things to consider as she has 2 little ones that need her attention all the time. Heather told me a story about how she was feeling low in a grocery store parking lot and knew she needed sugar immediately but also couldn't let go of her 2 year olds hand for fear she would be hit by a car. In her words, "Diabetes forces you to make impossible decisions at a time when you are unable to make even the most basic decisions." It was an eye opening experience for me as I realized I was looking into the future of Jack and Annabelle, to a time when I won’t be there to help them manage the everyday grind of this disease. I won't be there to ask them all the unrelenting questions and make sure they have their KITS. I think Heather could see what I was thinking and she said, “I want you to know that having T!D forced me to choose solid responsible friends and to live a healthy lifestyle, and that has been a true gift.” Thankfully Heather is smart and so are Jack and Annabelle and we pray they make the same responsible choices that Heather has.
We know how hard being a parent is and how hard it is being a kid, and we also know that it could be a hell of a lot worse. But this disease sucks and it is very much on the rise. And you never get a day or even a few hours off.
Jack and Annabelle and the other 1.25 MM American with T1D need a cure. There is good news. JDRF is helping to fund amazing developments in both better management and a cure for the disease. This year my family was asked to serve as the Fund A Cure Family at the JDRF Gala in May, we are so thrilled as we get to raise awareness for this disease and we truly hope one day we will be able to say, “Our 2 children used to have diabetes.”
We are proud to be hosting our 3rd Annual JDRF Fundraisers at WIP Avon Saturday, November 21st and at WIP WeHa Sunday, November 22nd. Last year we raised over $9,000 and we would love to beat that this year.
Follow this link to find out all the information about the event and learn the 3 ways you can donate to this amazing charity.
If you would like to donate an auction item, we would be thrilled.Please email Marykate@wipfitness or Laura@wipfitness to if you have an item or service you would like donate
Thank You so much for your support,
Jack, Annabelle, John and I (and of course Charlie)
Jack and Annabelle!
Jack and Annabelle being silly showing off their blood drops
Heather and I