I knew when my son Joey was diagnosed with type 1 diabetes that we'd have a lot to learn. Boy did I underestimate just how much. I was with my daughter and her husband through my grandson’s diagnosis – I even attended the classes at the children’s hospital with them to try to grasp this disease. I was overwhelmed then, because I couldn’t practice it at home. Now that Joey is the one with diabetes, it’s a different overwhelmed feeling. Now the reality is ours.
Learning about Diabetes after Diagnosis
When your child is diagnosed with diabetes, you feel responsible, guilty and protective. Was I somehow responsible for his diagnosis? If he wouldn't have gotten sick his body wouldn't have attacked its pancreas. For me, the guilt was that I didn't see the symptoms earlier. I have a grandson with type 1 diabetes – I knew the symptoms. I guess I didn't think it could happen to the same family twice. Now I just want to take away his pain. Why couldn't I have gotten it instead of him? Then the harsh reality sets in that this is your child's life and what you do now will affect how they live the rest of their life. So, we started to educate ourselves about diabetes and have never stopped looking for new information.
We also decided to be a voice for other kids and families with diabetes. If we can show people how we live – the struggles and the triumphs – maybe someone will take away a little piece of information that they can use with their own family or a friend with a child with diabetes. We missed Joey's symptoms at first, so we want to hammer the symptoms home to others.
Do you remember what it's like to start a new job? All of the nervousness about learning your way around the office and learning the new tools? That’s what it's like for the parents of a child diagnosed with diabetes. Our first two days after diagnosis were spent in the classroom at the endocrine department of the children’s hospital.
It was so scary. I thought, “You want me to do what? Give my kid a shot? I've never given anyone a shot before and now I will be doing it every time he eats carbohydrates?” And what about an insulin-to-carb ratio? Hold on, let me take notes. After the class ends, your reality starts. But you do keep visiting your healthcare team throughout the first year to continue your diabetes education.
A Diabetes Lesson
I thought I'd give you a little diabetes 101, because even the language can be daunting. For instance, would you know what the following words and acronyms mean?
T1D, IOB, ICR, A1C, BS, BG, DD, MDI, CGM, DKA, Basal, Temp Basal, Bolus, Correction Factor, Dawn Phenomenon, Glucagon, Diaversary, OmniPod, Insulin Pump, Pods, Fast-Acting
These are just a few of the terms we commonly use when speaking to other D-Rents (parents of kids with type 1 diabetes), as we call ourselves. I'll use some of the acronyms and words in a sentence to see if you can figure it out (don’t cheat by looking it up!):
"My 12-year-old T1 son, dd 5-10-09, has been on the Omnipod pump for 3 years. We really like the Pods. When we were on MDI, Joey didn't feel like he could eat whenever he wanted to. The nice thing about the Omnipod is that it shows the IOB, so we don't have to worry about over-dosing him. His A1C has improved greatly since starting it. I love that I can change his basal rate easily and we can even give a temp basal. His ICR has remained the same over the past year and his BS has been consistent. I also love our CGM. It shows us his peaks and valleys. He still has the dawn phenomenon, which we’ve learned to do a correction factor for at 4:00 AM. Thankfully, we have never needed the Glucagon. Joey uses a juice pouch as his fast-acting sugar source. We’re so happy that we’ve never experienced DKA and hope we never do. We just had our 4th Diaversary with type 1 diabetes and celebrate that he is doing well.”
Yes, this is truly how we speak to each other; it’s like our own language. Now here is what some of the acronyms mean:
- T1D: Type 1 diabetes
- IOB: Insulin on board
- ICR: Insulin-to-carb ratio
- A1C: A test that measures a person's average blood glucose level over the past three months.
- BS: Blood sugar
- BG: Blood glucose
- DD: Diagnose date
- MDI: Multiple daily injections
- CGM: Continuous glucose monitor
Now, your homework for today: Hug someone you know with type 1 diabetes and their caregiver. Class dismissed.