It’s been over two years since Tyler was diagnosed with Type 1 diabetes. They were right when they said it is the disease that never sleeps. For the last two years, we have monitored sugars, counted carbs, budgeted for supplies, worried about insurance premiums, educated others about his conditions, worried, prayed and cried. It’s the ultimate rollercoaster ride, and selfishly, I hope no one else will join!
If you were to ask me what the hardest part of his diagnosis would be, the answer is simple. That there is no cure and that I cannot fix it. As a parent, we want to fix it all and fix it quick! But, that is just not possible. His pancreas will never produce the insulin he needs to process his dinner, the champagne he will drink at his wedding or his child’s wedding cake. For those without Type 1, we do these things every day without a worry, but for Tyler, every carb must be counted and evaluated. He currently wears two devices on his body, 24 hours a day. I don’t know about you… but, I can’t even stand wearing my glasses all day. He has had what I call “device exhaustion”. They rip off, they itch, they cause abscesses…they are just there. Even the dog accidentally ripped out his insulin pod one day. This is something I would never have imagined would be his path. So, yes, the hardest thing is that there is no end.
It is also hard to know that while there is no cure, there is also no exact cause of why this happened. So, we are on constant alert. His other brothers could potentially have it at some point now that Tyler has it.
However, through the madness, we have also celebrated his health, his never seeing the inside of an ER, his lowering A1C levels during a pandemic and his amazing doctors and support system for keeping him healthy. This has not been an easy journey, but, it has been our journey. We have met so many families with the same story, the same worries and the same prayers for a cure. We speak the same langue of hope, sadness, worry, love and understanding. There is no one else who understands the love hate relationship we have of beeps and alarms through the night than another Type 1 parent.
So, on World Diabetes Day, I encourage you to learn more about Type 1 diabetes and wear blue to support all those, like Tyler, who are living with Type 1 each day!
Please reach out any time with any questions about living with a child with Type 1.