It’s not my disease.
Surely diabetes takes a toll on an entire family but I remember the story that friend shared years ago when our journey was just starting about whose disease it really belonged, and it was an important lesson I never forgot.
Let’s call her Kathy. A woman around 38, a beautiful woman inside and out with a husband and a sixteen year-old daughter at the time of this story about 19 years ago
The conversation went something like this:
Kathy: I want to tell you something Tom, and you will get angry but you need to hear it.
Kathy: I have had diabetes for over 30 years and it belongs to me. It did not belong to my parents. You, as a parent need to know this point. The best gift you can ever give Kaitlyn is to give it back to her.
Me: What are you talking about? It impacts the entire family; it belongs to all of us.
Kathy: No, it doesn’t.
Me: How can you say that….
Kathy: Listen. It DOES impact all of us but you must give it back. From the time I was diagnosed my parents did everything for me. Measured my insulin, gave me my shots, checked my blood sugar. Everything! They did everything for me because they felt I should not have to ‘worry’ about it as a child. I did nothing.
Me: That’s how it should be, you were a child, and it’s our job to….
Kathy: Wait. When I was 14, my mother and father were killed in an automobile accident. Just like that they were gone. In as much as I was so distraught at their death, I became angry as the months went on because I knew NOTHING about my diabetes. Nothing. I had it for years and I knew NOTHING. I became angrier that they didn’t teach me about MY diabetes than their own deaths. It took years of me speaking to someone to understand that it was their love for me, BUT…….I should have been taught.
Me: Wow Kathy I’m sorry.
Kathy: Learn and teach. The best gift you can give your child is to give diabetes back to them. Be there every step of the way but teach Kaitlyn starting now. You are never too young. It’s not your disease Tom, it’s Kaitlyn’s, never forget that because at the end of the day SHE has to be the one to manage it.
By time Kaitlyn was five, she was testing her own blood sugar; by six she was injecting herself after we measured. By 8 she was managing most of it by herself, under very watchful eyes, but herself none-the-less.
Because at the end of the day, it’s not our disease, it’s Kaitlyn’s (and now Rob also).
Thank you ‘Kathy’ wherever you are today.
I’m a Diabetesdad.
0 thoughts on “Parents, Diabetes IS Not Yours, Give it Back.”
Bettyann Marx says:
I am going to show this to my son. daughter-in-law, and husband. Emma has been doing her finger sticks since shortly after her diagnosis. She will ask how many carbs are in foods when asking for it. She wants to know “what am I” when she is checked. She is only 3.5 years old and was diagnosed a little over a year ago. We all talked about how much to let her do and know. We (Mom, Dad, Noona, Pap) decided it was her disease and we were here to manage until she could and teach her everything we learn. Thank you so much, Kathy, for the support in doing so. So many have been critical that we involve her.
My daughter is also 3.5 and was diagnosed a few days after her second birthday. She asks me everytime about her reading and how many carbs are in whatever she is about to it, but only after she asks me if she can eat! I thought it was great that our children seem so similar.
We have often struggled over the years with how much of ‘d’ management should be done by our kids. Our first dx was with our oldest boy who was 2 years old. Through trial and error we came to the realization that what they didn’t know or learn could kill them. We involve them in all their care, sometimes having to push them to do the math, read the label or inject when they don’t want to. Our next steps will involve teaching nighttime safety, we haven’t got there yet because our oldest is just 13 now. This post really helped me feel better about taking those next steps. Teaching them now while they still have us (parents) to back them up. Thanks for sharing, Lea
Thanks for a thought provoking post. I started reply and it grew to a full post. That very much is the sign you thoughts here are catalyst. Thanks for that.
Nice stuff on your respone as well (I was a Starsky and Hutch/Mod Squad watcher but I read your ‘geeky’ post anyway. 🙂 )
What happened to Kathy is our biggest fear. But what about the young teen that can do most of her D care herself, and does, but is not interested in learning how to determine and set basals, how to fine-tune and change bolus insulin, Total Daily Dose, how and when to reshift… basically the diabetes math. Because this is what is behind the daily care and what they need to know. But she has let us know she does not want to deal with this right now. I would like to teach her that part, not turn it over but to involve her in discussions. She does manage by putting on temp plus and minis basals or she will adjust insulin when going low by not charging for all food eaten at a meal. At what age is it appropriate to insist they learn the fine points.
Non-compliance by any youth is troubling. If you have not tried a d-camp or at the least trying to attend Children With Diabetes Friends for Life (there are scholarships available, usually for both if money is a problem)–I would suggest you look into them; especially CWD. What camps are to individuals, CWD is to the entire family. Here there is much peer-to-peer interaction and no matter what we, as parents, say or do—we do not have diabetes. Hence we truly DO NOT know what it i slike to live with it as much as our kids. Look into it—life changing is the only word I can use.
I stumbled upon your page. I have to say that I NEEDED this. I feel as if this post was written for me. Thank you for sharing this story. I can grow from it for sure.
Your comment made my day—-the light at the end of teh tunnel is NOT a train coming the other way. Better days are better days. Thanks again.
Krissy McMomma says:
Thank you for this. We have started “Ella Does Diabetes” Days (every Saturday) at our house where she manages and we watch, rather than vice versa. She’s 7 and has had T1D for 9 months and I feel like the sooner I start teaching her, the better…for all of us. This post really encouraged me to start now rather than to wait. I’ve started blogging about it and will continue to update others on our progress!