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It’s a news that no parent ever wants to hear, that your baby has a chronic medical condition. My daughter was diagnosed with Type 1 Diabetes when she was only 15 months-old. Type 1 Diabetes is an autoimmune disease where the person’s pancreas stops producing insulin. For more information about Type 1 Diabetes, please refer to my blog about this chronic medical condition (here).
When my husband and I received the news, our perfect little world just crumbled. I was in shock and could not believe that our perfect little girl was going to be having this lifelong disease, where there is no cure in sight. The night that she was diagnosed, we “slept” in the hospital. I say “slept” because I was getting up all the time, due to the nurses checking her sugars every 2-3 hours, and me crying non-stop ever since we received the news.
Our life changed completely. We have a life before Diabetes and a life after Diabetes. People think that Diabetes Type 1 (Diabetes Type 2 is different) is something that you can just take insulin, and make a diet and you are all set. In part it’s true, but when the person who has the condition is just a baby, and cannot express herself well on how she is feeling, it is a different ballgame. For the health insurance, they consider Diabetes (no distinction between Type 1 or 2) as a manageable condition, again, part of it it’s true, but this condition is very unpredictable, and the fluctuations in her sugars are different every day. We can do the same thing every day (i.e. give the amount of insulin recommended, and try to give her good eating habits; very difficult for a toddler), and the next day all our tactics and strategies to combat this disease, do not work. So up again into the drawing board, to find a new plan, on how to manage her disease. It’s a never-ending battle.
Most people do not have any idea of how parents whose kids have this chronic illness manage it daily. Diabetes never takes a break. This condition needs to be managed 24/7, 365 days in a year. If we give too much insulin, my daughter can go into a coma, and if we do not give her sufficient insulin, she can go into DKA (click here for more info). In the beginning, it was killer for me as a mother, because I needed to poke and prod my daughter about 16 times a day!! That is a lot for a little 15 month-old baby and the parent! All the times that she was being poked and prodded was between checking her fingers and injecting her via syringe with the life-saving insulin. I cried every time.
My husband and I are thankful for all the help that we are getting from her doctors. We currently live in Massachusetts, and let me tell you something, the medical care that my daughter has received here, has been A+. I have read some horror stories on Facebook and Facebook Groups about people not getting their insulin or not getting the care needed to treat their Diabetes, and my heart just breaks for them. I am very thankful to work for a federal agency, where the health insurance provided for the employees and their families, is also A+. My daughter’s medical supplies from the Continuous Glucose Monitor (CGM), insulin pump, insulin vials etc, are all covered 100% by my health insurance. I do not need to pay out of pocket for anything, other than the hefty monthly premium that comes out of my paycheck every two weeks.
At this time, my daughter is 3 years old. We have only been to the ER like 1-2 times, but for non-related Diabetes issues. The education and training that my husband and I have received from her medical doctors, like I said, it has been A+. They really have taken the time and effort to teach us well, and at times even call me personally and ask me how we are doing! What doctors do that? I come from Puerto Rico, and this was never ever done by my doctors. I have never heard of this personal follow up relationship between doctor and the patient.
My daughter is a healthy little girl, who doesn’t seem to mind having her insulin pump on her all the time. She is just a typical toddler, with her tantrums, and picky eating habits, and for this I am grateful.
No one ever tells you how hard parenting is when your child has a delicate medical condition. Parenting a child with a medical condition it’s very draining. You just wish that the condition happens to you, and not your child. Every day I want to trade places with my daughter, so she doesn’t suffer the poking and prodding to make sure she is well.
The best thing that my husband and I can do is to educate ourselves more, and always be aware of new medical devices and medicines to treat her Diabetes. I really do hope that there is a cure and that in the future, no more kids suffer from this disease, and that my daughter is part of this cure.
For more information about Diabetes Type 1, please go the JDRF website.