Love this forum, so figured it was time for my first topic post…
I’ve had T1 since 1982, doing well overall. Have been on a MiniMed/Medtronic pump for 20 years (seriously? Has it been that long?!?), and have two elementary school aged children. My 9 yr old was diagnosed this past year: we caught her symptoms very early, so she spent the first 6 months of her diabetic life in a bit of an easy limbo. She started taking insulin in October, and now has a Dexcom G5 and I’m able to use the “Follow” app to keep track of her sugars remotely. What a huge difference this technology makes. Big sister is taking things in stride, getting support from friends and expressing her frustration when she needs to. Since Dad doesn’t have diabetes, it’s been a bit tough for him, as our daughter defers to me since I “really KNOW”, (ha). But, overall it hasn’t been as much of an adjustment as it could have been, since the whole family is used to my diabetes and our friends and community have been open and supportive.
But, here’s the rub, and it really hit me this past week when I needed to go along as a chaperone for a three day school outdoor education trip:
It’s hitting me, hard, just how much things have changed since my diagnosis, and much of the autonomy and freedoms I had, that my parents encouraged me to have, are not options for my daughter. From the very beginning, I stayed overnight with friends and managed my shots and food myself. I took shots in the bathroom at school. I lived abroad in 8th grade without my family, and took care of my diabetes. I also understand that that type of freedom and autonomy led to a lot of young and early deaths among my cohorts, and plenty of long-term complications. Huge downside.
Now, I know and really do understand that THIS “new” diabetes, and modern management and technology mean that my daughter’s diabetes is almost a different disease from that of 1982 and beyond.
Everything, from flexibility in diet to carb counting to types of insulin to easy and quick BG meters to pump and CGM technology, everything makes a diabetic life easier and healthier.
But, the rules have also changed, and my daughter will have to have me or another qualified adult with her and looking over her shoulder in ways that my parents never did. My mom was a physician, so was intimately involved in getting me good care, but both of my parents stressed that I was strong and resilient and healthy and could do most of this myself. And, I did. It’s different now.
I’m not complaining about the current and future extra burden on me: this is part and parcel of being a parent, and I’m so thankful that of ALL of the things that could come my daughter’s way, this is a disease and condition and treatment that I know very, very well. I’ve lived with it forever, went to diabetes camp, worked at diabetes camp, and worked professionally with kids and families with chronic illnesses.
But, my girls are independent children, and strong minded. My husband and I want them to be that way, and send them to a Montessori school which further instills those values of peace, autonomy, self-sufficiency, competency, and balancing individual needs with community support. I’m so very thankful that they are confident in their quirkiness and are in a school system that values and supports them as they are.
But, my daughter was heartbroken that I needed to be with her at the outdoor ed camp, for every activity, and I was heartbroken for her. Other kids said it wasn’t fair: why couldn’t THEIR mommy or daddy be there, too? But, I needed to be there because of camp and school policy, for safety. She didn’t want me there and I wanted her to have the group bonding and autonomy involved in the trip without her mommy two feet away.
So, now to the meat of it:
I was driving behind the school bus and of course was running late. Got even farther behind because of errands at home, about an hour and a half to two hours behind when they all arrived at camp. I got a call from the camp nurse, and got a call from school saying that my daughter had lost a part of her meter or had left her backpack in my car, or something: hard to understand what. But nobody knew what to do: nobody knew how much insulin to give her, as I hadn’t sent her orders to the camp nurse because I would have to manage it all while there. I wasn’t sure from what they said if she even had her insulin with her. I ended up talking with the head cook, with the nurse and with the teacher and we were able to figure out a way for it to be OK.
But in the car ride from that point on, I felt terrible that I was, once again, late and now putting my daughter at risk: I wasn’t there, where I should have been, and drove along feeling so overwhelmed and just so sad.
First of all that, of course, I was late and running behind. I had messed up as the very first act of being there per camp policy.
Also, I felt so sad that my daughter couldn’t just be on the on the bus ride with the rest of the kids at her school and arrive at camp with her medical information and have that be enough to be OK to be taken care of and in the way that she is able to do at school. That’s the way that the teachers, school nurse, and I are able to help her each day at school.
And it really just hit me that for the forseeable future, any autonomy with her diabetes that my daughter may have is really kind of up to me and up to us. It’s up to the system: it’s up to the school and the structures that are in place to keep her and other kids safe healthy. That will mean less freedom.
I think that’s a good thing overall, but it just hit me and made me so sad and feel really sorry that this is what she’s going to have to face. It’s not the end of the world it’s not even that big of a deal but it falls to me and my husband to take care of her, and in so doing, take away some of that sense that she can do things for herself and on her own.
Am wondering how other parents, with or without diabetes themselves, manage these types of things and would love to hear how you’ve gotten through these emotional bumps in the road when they come along.
I have a strong support system overall, friends, teachers, doctors, nurses, and therapists who all have our collective backs. But it does feel heavy on me right about now.
Thanks, in advance.