My Real Life with T1D
Michelle’s Story: My Baby was Diagnosed with T1 Diabetes
As the Co-Founder of WaltzingTheDragon.ca, I came to this job through my first (and most important) job as the mom of two school-aged children.
Of most relevance to this post, I am a D-Mom. An at-first-reluctant, now-accepting, always-proud Diabetes-Mom. My son, Max, was diagnosed with type 1 diabetes in 2008 at the age of 14 months.
We were shocked when Max was diagnosed with diabetes on July 6, 2008. Shocked despite a family history of diabetes (my mother-in-law has had type 1 diabetes for 45 years). Shocked because at this point we had not even an inkling that I would later be diagnosed with Celiac Disease (which genetically has much in common with diabetes). Even if we had known the risk, I don’t think anything can prepare you for hearing that your child has a chronic, potentially life-threatening illness.
When I look at this picture now (while he was an in-patient at the hospital), it hits me that he was so little, he was just a baby!
People ask me, “how did you know?” and I answer with all the classic symptoms of diabetes: he was drinking lots, and had very wet diapers – so full of urine that he wouldn’t make it through the night on two diapers. Even the premium, “no leaks guaranteed!” diapers. He also had a fruity, nail-polish-like smell to his breath. Everyone else said it was fine, he just ate strawberries so that’s what the smell was. But deep down I knew there was something wrong.
So we booked an appointment with our family doctor. It took almost two weeks to get a spot, and in the meantime… more heavy, heavy diapers. Looking back now I realize how listless he was then; he had no energy. A little boy just over a year with such low energy?! Then he started to have trouble breathing, and we knew we couldn’t wait for the doctor’s appointment. So on that Sunday afternoon, we drove to the Alberta Children’s Hospital here in Calgary, and as my husband was parking the car, I sat my baby on the triage desk and said: “My son is having trouble breathing. I think he has diabetes”.
I was right. His blood glucose when he was admitted was over 34 mmol/L (612 mg/dL). His breathing was laboured because he was in DKA (Diabetic Ketoacidosis). Without insulin, his body couldn’t use the sugar in the foods he was eating, so instead it was burning protein and fat for fuel. The toxic by-product was ketones. That was the fruity smell on his breath.
We spent the next few days at the hospital with him. While the doctors and nurses were giving him life-saving treatment and helping his body recover, my husband and I spent time with the nurses and dieticians from the Diabetes and Endocrine Clinic, learning all the ways our life as a family was about to change. At the time, all I could see was “change for the worse”.
I spent the next two years in a fog. When Max was diagnosed, I was one month pregnant with our daughter, Gemma, and caring for my dad, who was terminally ill with cancer. So the next few years became about survival: caring for a newborn, catching sleep whenever I could, and learning how to care for a child with diabetes… checking blood sugar, carb-counting, looking for patterns of high or low blood sugar, changing the insulin doses to try to even out these swings, dealing with blood sugars that not infrequently rose to 18, 22 or higher, feeding him sugar water through a syringe when his blood sugar was low and he refused to take the low treatment. I remember we used his empty baby food jars to pre-mix the right amount of sugar water, and left them in a row on the inside of the fridge door.
I simply went through the motions and did what needed to be done to keep our son as healthy as possible. When I look back now I realize that for those first few years, we were simply in survival mode; I was overwhelmed and tired; it was hard to think about all the “extras” that could be done, that “should” be done. I didn’t even try to come up for air.
So months passed. Other than brief bouts of grieving, we put our feelings aside and focused on learning the mechanics of our new life, our radically new way of thinking and being. There was little time to process how I felt about all this. I accepted as reality that the diabetes dragon had moved in with us, but I didn’t have time to think about it or to grieve what we had lost, and I certainly didn’t have time to learn anything from it. I had bouts of tears and anger, like when I had two hungry and crying kids hanging on my legs but couldn’t feed them until I finished counting carbs and injecting insulin. I would think, “Why us? So-and-so doesn’t have to do all this, they can just feed their kids when they’re hungry. It’s not fair. Life sucks.” Maybe you have had moments like this, when diabetes is beating you up, and you can’t see an end in sight. This state has been referred to as “Diabetes Distress”, or “Diabetes Overwhelmus”, or in the extreme, Diabetes Depression. (I don’t want to bring you down… hang in there with this story, things got better!) But for us, things got worse before they got better.
In July of 2010, our daughter, Gemma, who was 17-months-old at the time, had a high blood sugar episode. She was listless, eating very little, and kept gagging, like she was going to vomit. A check with her brother’s meter showed that her blood sugar was 15.9. In someone with a fully functional pancreas, blood sugar doesn’t rise above 11. So back to the Children’s Hospital for our family. We were told that she would inevitably develop type 1 diabetes like her brother, and would be on insulin within weeks or months. We checked her blood sugar twice daily, and waited for the double-dragon to move in. To make a long story short (and here’s where it starts to get better!) she never did develop diabetes – and that was over six years ago. By the grace of God, she has not had another high blood sugar reading since we headed to emerg that day.
But that experience with Gemma was a catalyst for the grieving that I had never really allowed myself to go through when Max was diagnosed. It brought everything to the forefront. I started to kick for the surface of the water. I cried. Lots. Like when I was compelled to drive 12 hours to a Friends for Life conference in Vancouver; there I bawled my eyes out in a conference room full of 500 strangers. My own recovery (separate from my son’s physical recovery) had begun. My emotional learning, and the creation of meaning from our family’s pain, was on its way…
Read more about what I have learned from the dragon:
All I Really Need to Know I Learned from Diabetes
Share Your D-Story!
We all benefit by sharing our stories: stories of diagnosis, stories about what we’ve learned, stories of all the ways we’ve fallen down and all the times we’ve gotten back up. Funny stories, sad stories, frightening stories, hopeful stories. All of them, ultimately, stories of triumph. I would love to hear your diabetes-stories! With your permission, and with or without names or pictures, your family’s story will appear under D-Stories on WaltzingTheDragon.ca
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