OUR STORY

It’s a piece of 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 post about this chronic medical condition.

How Did We Get Here?

My husband and I had just come back from vacation from Puerto Rico in December 2015, after visiting our family. My daughter, Amanda, had developed a weird cough that basically did not go away for about two months. So, in the end of February 2016, we finally took her to the Pulmonologist,  who diagnosed her with Reactive Airway Disease. The doctor basically told us that her airways were inflamed after a possible cold that she must have acquired and that it should resolve on its own.

That same day, Amanda had her well-child visit with her Pediatrician. I told the Pediatrician what was happening with her cough, and the doctor gave her a dose of Prednisone, in an effort to open up her airways, so she could start feeling better. The Pediatrician told us to go home, and return that same week to give Amanda her immunizations shots.

The rest of the day was a normal day for us, nothing out of the ordinary. Amanda ate her dinner as she normally would, drank her bedtime milk, and she was in bed by 9 pm.

The Night Where It All Began

Amanda and I were sleeping together, we co-slept while she was young, and at midnight she woke up crying, but this cry was a desperate cry. When I picked her up, to calm her down, her side of the bed was soaked with urine, her diaper was totally drenched and almost falling off of her. My first thought was “did I change her diaper before bed? I must have forgotten.”

I changed Amanda’s PJs, changed her diaper, and changed the soaked bedding. After I gave Amanda her milk, thinking she was crying because she was hungry, something inside me made me search for her symptoms on Google. My heart sank when the first thing that popped into the search results was “Type 1 Diabetes”. My first thought was “No! I cannot be diabetes, she is ONLY 15-months old, AND I am still nursing her!”. I closed my cell phone and went back to sleep, well, tried to.

Amanda woke up that night two more times with her diaper soaked in urine. By the third time that she woke up, instead of giving her milk, I gave her 10 oz of water, and she basically gulped it down, like there was no tomorrow. At that moment, I knew this was NOT normal.

Diagnosis Day

I took Amanda back to the Pediatrician for her shots, but before that happened, I told the doctor what Amanda had been doing for the past three days. The Pediatrician’s first words where “I hope its not Diabetes”. Amanda was immediately tested via her urine, and it was confirmed, she had glucose in her urine.

I was sent urgently to the ER. When one of the nurses checked Amanda’s blood glucose with the glucose meter, it read 419! My worst fears had come true! In a way, I still had hope that the urine test was a fluke, but once that blood glucose came, I just lost it.

As soon as my husband and I received the news that our perfect little girl has Diabetes, 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.

Our life changed completely. We have a life before Diabetes and a life after Diabetes. Some people think that Diabetes Type 1 is a condition that can be cured by health remedies or oral medication. The health insurance considers Diabetes (no distinction between Type 1 or 2) as a manageable condition, but Type 1 is very unpredictable. We can do the same thing every day (i.e. give the appropriate amount of insulin, healthy eating habits; very difficult for a toddler), and all our efforts simply do not work. It’s a never-ending battle.

Living with a Chronic Illness

Most people cannot fathom how parents whose kids have this chronic illness manage it daily. Diabetes never takes a break and needs to be managed 24/7/365 days a year. If we give too much insulin, she can go into a coma, and if we do not give her sufficient insulin, she can go into DKA. In the beginning, it was killer to watch my baby being poked and prodded about 16 times a day!! That is a lot for a little 15-month-old baby and the parents! I cried every time she was being poked and prodded in order to give her the life-saving insulin.

Where Are We Now?

My husband and I are thankful for all the help that we are getting from her doctors. At the time that I am writing this post, we are living in Massachusetts, and so far the medical care that my daughter has received here has been exceptional. There are some horror stories about diabetics not getting proper treatment for their illness and my heart just breaks for them. I am very grateful that my employer’s health insurance fully covers all her medical supplies.

The education and training that we have received from her doctors have been extraordinary. They have taken the time and effort to teach us well, and at times even call us to see how we are doing!

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 her, so she doesn’t suffer the poking and prodding.

The best thing that my husband and I can do is to continue to educate ourselves, 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 to the JDRF website.