My 7 year old son was diagnosed with Type 1 Diabetes at the age of 3. Early on, when he was first diagnosed, there was a steep learning curve to understand how to manage this chronic disease. We went through an immediate lifestyle change as a family to adjust to the new reality of managing T1D. One of the main lessons we kept in mind is that he is just a kid, and that means we try our hardest to make life as normal as possible for him.
The hard reality of T1D is that it is an invisible disease and an invisible disability. He takes injections of insulin for everything he eats, and his mood and behavior is impacted by his blood glucose levels. He wears a monitoring device that is inserted under his skin to monitor his number, and he takes multiple daily shots to regulate his levels. If he is too high, he might end up in the hospital from high blood sugar levels. If he goes too low, he might end up in a coma, or have seizures. He relies on insulin to stay alive. He relies on us to regulate it for him. The crazy part? Because it is not a visible disease, most people don’t know the impact it has on a family. It is definitely a manageable disease but it requires constant monitoring. Since he is a child and he cannot adequately describe what he is feeling when he is high or low, it is even harder for those around him to understand what he is going through emotionally and physically. I took it upon myself to be his voice and to be an advocate on his behalf.
I clearly remember the day I realized that I needed to be his voice. He was in Kindergarten and was newly diagnosed. A friend had a birthday party in the classroom and cupcakes were brought in and shared. However, my son’s cupcake was saved in the fridge. It was given to me when I went to pick him up at the end of the school day. As you can imagine, he felt awful about not being able to eat it right then and there with his friends. He felt left out and different. That day, he told me he did not want to have diabetes anymore. That was it: that was the moment I realized this was not just a family affair. He was not in a bubble and the world around him does not know a lot about this disease. The next day, we had an open conversation with his school to ensure an approach of kid first, diabetes second. He was not excluded from anything his friends were having from that moment on.
I have to emphasize that the school did what they did with the best intentions in mind. The moment I had a conversation with them, they were very supportive and on board. They just never had a T1D child at their school before. He was newly diagnosed and the teachers thought they did what was best for him. I understood that I had to step out of my comfort zone to be a voice for him.
Today I continuously raise awareness about this invisible autoimmune disease and its impact through sharing our journey on Instagram and through educating friends, family and schools on the subject whenever possible. We learned to live in acceptance, self-love, and appreciation of everyone who loves and supports us, and we continue to celebrate his resilience and his fight. It is what keeps us going strong through the highs and the lows.
I am from Fairfax, Virginia, wife, mom, scrum master, multi-passionate creative, and a parent to a wonderful type 1 diabetes warrior. Instagram Handle: @ThisT1Dparent.