Modern Mishpocha: Managing challenges in your child’s life

By Jen Perzow

Summer fun was on the agenda for my sons and me on July 21, 2017. It was a relaxed day spent playing, laughing, toy shopping and eating ice cream. We planned to end the day with a romp in the splash pad and dinner in the park after a quick stop at the doctor’s office. I remember driving around the city that day feeling grateful for the simple, easy, fun time we were having. It was a day of “yes” – a day when you say “yes” to requests more often than you say “no.” Those days don’t happen all that often.

I wasn’t expecting anything significant to come from the doctor’s appointment. Our youngest, only three at the time, had started wetting the bed again. This coincided with his first experience at day camp, so we chalked it up to a reaction to the change in his routine. But then the frequency of the accidents increased significantly. During the day, he was constantly thirsty and always needing to pee.

Our amazing family physician came into the exam room and upon hearing the symptoms went straight to get a small device to check his blood sugar. Within minutes of arriving at her office, she looked at me and said, “He most likely has Type 1 diabetes. You need to take him straight to CHEO. Do not go home first, do not make any stops along the way. I will call ahead and tell them you are coming.”

It’s always a shock to have to make an unexpected trip to hospital, especially for one of your children. As much as we complain about having to wait to be seen in the emergency room, not waiting brings its own special kind of panic. Not waiting is serious. Sure enough, after more tests and conversations with the stellar team at CHEO, they confirmed a diagnosis of Type 1 diabetes (T1D).

T1D is an auto-immune disorder that causes the pancreas to stop producing insulin. Without insulin, cells in our body are not able to absorb the sugar that they need to survive. A buildup of too much sugar in the blood can cause lifelong complications and/or death. Not enough sugar in the blood can also be fatal. While T1D can be managed today, there is no cure. It can happen to anyone.

T1D signs and symptoms can appear relatively suddenly and may include increased thirst, frequent urination, and bedwetting in children who previously didn’t wet the bed during the night. If not detected and treated, additional symptoms can include extreme hunger, unintended weight loss, fatigue and weakness, and blurred vision.

Parents of kids with T1D speak about the shock, grief, anger, fear and sadness that accompanies the diagnosis. It is a bit like having a newborn. You are overwhelmed, exhausted and emotional at a time when you are taking on heady responsibilities with a steep learning curve.

Your days are filled with multiple injections and constant pleas for the needles to stop. You tell your child that the needles will not go away and eventually you learn to do so without tears in your own eyes. You weigh food, count carbohydrates and measure insulin. You prepare yourself for insulin pumps, continuous glucose monitoring devices, and emergency kits. You teach others how to keep your child alive and safe. You learn about future complications without worrying that every mistake you make will have dire consequences down the road. You learn to manage a disease that previously was nothing more than a word. Now it has changed your life.

While November is officially National Diabetes Awareness Month, for this mom, July is always the month when I look back in wonder and gratitude for all that we’ve learned, the support we’ve received, and for every single additional day with this precious child and his amazing siblings who are all daily reminders of bravery, resilience, strength and love.

A shoutout to anyone managing big and little challenges in their child’s life, especially the challenges that very few people see or know about. You are not alone. If you feel that you are, please reach out. I guarantee someone is waiting to connect with and support you.