Becoming My Child’s Advocate

When my son was diagnosed with Type 1 Diabetes at the age of three, there was a steep learning curve in understanding how to manage this chronic condition. As a family, we went through immediate lifestyle changes to adjust to the new reality of managing Type 1 Diabetes (T1D). His diagnosis became a family affair. His world changed so fast and he was not able to voice how he felt about it at such a young age. It meant we needed try our hardest to make life as normal as possible for him. It meant being the voice that advocates on his behalf to ensure his physical and mental well-being are met.

The hard reality of Type 1 Diabetes is that it is an invisible disease and an invisible disability to many who are not familiar with the condition. He takes insulin injections for everything he eats, his blood glucose levels need to be monitored at all times, and even his mood and behavior is impacted by his blood glucose levels. He relies on insulin to stay alive. He relies on us to regulate his blood glucose levels because his pancreas can no longer do that for him.

Most people don’t know that Type 1 Diabetes is categorized as a disability under the Americans with Disabilities Act (ADA) and that is I refer to it as an invisible disease. it is certainly not invisible to anyone who is living with the condition or taking care of a loved one with Type 1 Diabetes. It is a manageable disease but it requires constant monitoring, sleepless nights, and worrisome days. It is a 24/7/365 job. There is no cure and there is no diet or magic pill that can reverse it. It also is not has nothing to do with eating too much sugar or any eating habits for that matter.

I clearly remember the day I realized that I needed to be his voice. He was newly diagnosed and he had just went back to Kindergarten. A classroom friend had a birthday and cupcakes were brought in and shared in the classroom. 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. He felt awful about not being able to eat it with his friends but he didn’t have the voice (or knew how) to share his feelings. He felt left out and different. That day, he came home and told me he did not want to have diabetes anymore. That was it, that was the moment I realized I needed to advocate for him until he is old enough to advocate for himself. He does not live in a bubble and the world around him does not know enough about this disease. The next day, we had an open conversation with his school. We agreed that would have whatever everyone else was having and at the same time and place as everyone. We agreed to coordinate for for special occasions so he does not feel left out or different. From that moment on, he was not excluded from anything his friends were having or celebrating.

I have to emphasize that the school did what they did with the best intentions in mind. They were very supportive and on board with learning, training, and being there for him right away. I will always be grateful for their support. They just never had a t1d child at their private school before. This incident taught me that I had to step out of my comfort zone and be a voice for him when he couldn’t speak up.

Today, I try to raise awareness about Type 1 Diabetes and its impact through sharing our journey on social media and this blog. We learned to live in acceptance, self-love, and appreciation of everyone who loves and supports us, and we continue to applaud his resilience and his fight. It is what keeps us going strong through the highs and the lows.