A story for parents of CWD

First a disclaimer: I come from a loving home and my parents have always been concerned about my well-being. That said, they are human and from the beginning my diagnosis (at age 6) was hard for them to deal with. I was a good kid, but I was spoiled and used to getting what I wanted. Neither of my parents were particularly good disciplinarians and, I think, struggled to see diabetes care as something worth disciplining for. I remember in the beginning measuring food and checking my blood sugar levels, but I also remember eating cake and candy and ice cream. (This is before we counted carbs and did the same amount of regular and NPH insulin every day according to a set schedule.) I also remember showing up to the pediatric endo at the Children’s hospital and being handed two papers to fill out: one for the last week of BG readings, and one for the previous 2 day’s meals - we received these same forms every three months for my entire childhood – and I remember transferring the little data we had into the forms and watching as my mom filled in the rest of the data with fabricated numbers so that the endo wouldn’t yell at us. I remember falsifying these documents of my own free will as a teenager. I remember refusing to check my blood sugar or telling my mom I had taken a shot when I hadn’t and her not doing anything about any of it. I remember not ordering a new supply of test strips for over a year! (The ones we had were expired before we finally tossed them and refilled.) I remember going to the endo and crying because I knew my A1c should be less than the 11.2% that it was and I knew that I should be measuring my food and taking my shots, and checking my blood sugars, but it was too overwhelming for my 12 year old self to take on alone.

I was switched to MDI (with humalog and NPH) when I was 13 or 14. I learned, by myself, to count carbs. I started high school - I don’t remember experiencing lows in high school – I never carried snacks or glucose in my backpack, and I often left my meter and insulin at home and waited until I got there to do my shot from lunch. Anything below 200 felt low(ish). I read about insulin pumps. I had done a ton of research to see which I thought would be best, and I picked Animas because it was one of the only pumps that was waterproof – I figured this would allow me the greatest degree of normality. I asked my endo at age 16 and she said no, that my A1c needed to come down a little first. I wanted her help getting there but I didn’t really know how to ask. I was stubborn but at the same time I feared for my own future and secretly wanted someone to take these reigns from me. No one stepped up – not even me.

Not much changed by the time I turned 17 and went to my first adult endo. However, despite this, he was willing to put me on the pump - my first Animas IR1000. My A1c went down after this transition - a little - I leveled out around 10%. I still rarely checked my BG – going sometimes days between tests. I started college – moved 600 miles from home. I tried to schedule endo visits during summer and holidays but at one point went almost 6 months without seeing any doctor. My mom called me crying and asked if I was trying to kill myself. I couldn’t believe that she would think this - I love life and learning. I just loved life and learning so much that I allowed those two things to keep my mind off of my diabetes – and nobody was doing anything to stop me. To appease her I made an appointment.

I graduated a couple years later with honors, got into graduate school, and life was good. My A1c was still averaging above 9% - I realized the damage being done to my body but felt like it was too late to be a “good diabetic”. In graduate school, I got my own insurance, and made an appointment with an endo of my own choosing. I may have been good at ignoring my diabetes but I still went to these appointments religiously. My new endo was the first to really convince me that it wasn’t too late, and he gave me homework – something I was good at. He said, “be diligent for 10 days – write down everything – no excuses.” And I did. He adjusted a few things, sent me on my way, and in 3 months my A1c was 8.6%! I couldn’t remember ever being below 9%. This felt good! My boyfriend also decided to take an active roll in “encouraging” me to take better care of myself. (I use quotes because, while he was always well-intentioned, sometimes I felt like his standards for me were so high I couldn’t meet them. Nonetheless, I appreciate every single time he asks me about my BG at inopportune moments, insists on seeing numbers I try to hide from him, or tells me that my 135 could still be improved.) I began working out (a little) and things began to improve further (down to 8.2%), then I found the DOC. I read about people who test 10 times a day – I rarely tested 10 times a week. I saw that people were open about diabetes and shared their struggles and victories no matter how small. I couldn’t get enough of it – how did I never know about this?! My next A1c was 7.9% - Behold the power of community! At this point, I decided that I needed to make a change. I began to count carbs more diligently, and I signed myself up for a CGMS. I began to put my infusion sites on the back of my arm and occasionally wearing my pump outside of pocket (these seem like little things but were pretty huge leaps for me). I began to verbalize my frustrations and speak about my successes. My most recent A1c was 6.7%. Victory!

I, by no means, have it figured out. With my new lower A1c, I haven’t figured out how to workout without going low, I still over indulge in baked goods and am left with lingering highs all night, and I often forget to bolus until after the first bite (or sometimes the last bite) make their way into my mouth. But I’m working on these things - and The Biochemist (my boyfriend) continues to play an active role in keeping me accountable.

My purpose in writing this goes back to that first sentence – the disclaimer. My parents loved me. They were there for me in a million ways, but they neglected my diabetes out of fear, or anxiety, or refusal to accept what life had dealt, and for that I will always be somewhat resentful. I read about D-parents doing site changes in the middle of the night, about D-kids playing with their D-bears and counting the carbs in their play foods, and about the shared joy between grownup D-kids and their D-parents as they successfully transition into self-sufficient D-adults. Sure I may have had a more “normal” childhood, but I would give it up in a second to have grown up in a family like those I read about in the DOC. I turned out fine in the end, but I cannot undo the damage done by least 10 years of A1cs over 10%. So, Parents of CWDs, stay strong, be diligent, and fight the D-battles knowing that your children WILL appreciate it when they grow up.

I so can relate!!! My parents were clueless about this disease!!!

Be proud of the accomplishments that you have made!

Wow, Melanie… I felt as though I could have written this for the most part. You echo so much of what I lived through. But from a different perspective, not only as a guy, but from my being the only son of a Type 1 who’d been diagnosed herself at the wonderful young age of 5. Thank to her lifelong experience, I had the knowledge and she did take care. But, there was a level of trust and when the fake numbers were given to the Endo or the No Insulin Injections were happening, it was me lying to my mom and dad about it. They did their best, but in my mid-teens I rebelled and was in serious denial. And yes, a few years of A1cs skyrocketing WAY over 12% and at one point into the SCARY HIGH teens is my biggest regret. I live with that every day, and I hope that it’s not going to come back and knock me down at some point. But now in my early 30s, I do consider myself lucky to be where I am relatively complication free. And lucky to have had my parents’ love and support through the years, whether I listened to it and appreciated it at the time or not. Thanks for sharing this.

Thank you for this post. Finding a balance is hard. Good health and happy childhood are equally important things.

Congrats to you for taking ownership and not giving up. I’m glad you found the endo who told you it’s not too late. And then of course for the DOC. You put it so well. The impact is in fact measurable. Congrats on your A1C success.

All the best. @Colcalli :slight_smile:

Thanks for sharing and I agree that having supportive parents as you grow up with can make a huge difference in how well you take care of yourself. I also chose animas as my first pump because it was waterproof!