Mama Guilt: parenting with diabetes (T1 mom & T1 child)

[greta_LA]

Hi All,
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.

[Rphil2]

I also lament this. But maybe for different reasons. I did many things as a kid, i explored and got lost and got found. I had tow rules, do not tell on others and be home by dinner. I was diagnosed when I was 17 as I started my senior year in HS.

For over 4 months I did not tell the school. I had insulin and syringes in my locker, I took them when I needed too, I treated if low and all was well.

Until, until, that one day when I went stumbling into the nurse’s office and asked for juice. She withheld it and we had a discussion that resulted in calling my mother. Who confirmed yes I was, and yes she should. I received one of my prized sessions a note in my permanent record that said:“THIS BOY HAS DIABETES AND HE DID NTO TELL ME”. I love that note.

I also had to stay after school for a week in detention. ahh ok, if I must.
I felt sufficiently shamed and I promptly went on doing what I wanted to do.

Flash forward 25 years and I was a school, expulsion officer. Some kid had Midol, did not tell the school of the pills and of course, they were found. Medication in school without telling the nurse is grounds for expulsion. and I had to make the decision.

I considered the who case and received a promise from the young man. I decided he had to spend 1 week in detention and give up an optional credit class. I also told her one thing. Look I just paid back the person who saw a better kid in me, remember to pay me back someday when you have to make this decision. I made her agree to do the same sometime. I trust she will.

You know somethings stuff happens.

[Lorraine]

Hi, @greta_LA.

Thanks for sharing all this. So much of this I can relate to, but I also appreciate your comparison of what it was like for you as a child to live with diabetes compared to current day. As someone who has only lived it current day with my son, your description of a more carefree life brings perspective to what the current demands are. It makes me feel like Caleb and I hold ourselves to an unreasonable standard sometimes. We seek near perfection, and when we don’t achieve it, it can be discouraging.

All these feelings you have are, dare I say, normal, and I don’t know how to avoid them. It sounds like the grieving process and I sound like a desensitized pscho-analyst or something.

The first year was very hard emotionally for me, and then there were milestones in Caleb’s life that would bring those tough emotions back. It’s really hard to live in a world that does not prepare for the risks of type 1, when you have to prepare for them. Everyone around you seems to be in la la land, while you are planning for and worrying about a thousand different things.

Then it’s even harder when those around you who are living with type 1 don’t seem to have the standard of care that you do. Caleb was diagnosed when he was three. He’s currently 14. We invested so much time with school personnel to explain and train our management of Caleb. It’s a large school district with several other type 1 students and I was always baffled about our need to explain our therapy strategies that to me were basic. I’ve come to the conclusion that other students are probably not achieving the same results as Caleb, therefore the therapy is less intensive.

Caleb is older and more capable so it’s easier. But I remember being the safety net for him and going on trips and trying to normalize his experiences as much as possible. It’s exhausting.

One thing I’ve always done is address Caleb’s peers. I would go into class and explain to them in an age appropriate way what diabetes is and his devices and such. The kids always responded. I remember a boy who was otherwise a bit of a trouble maker, finding Caleb’s dexcom receiver on the playground and he was sensitive and knew it was important and treated it with urgency and care. Addressing the kids didn’t eliminate insensitivities, but it helped. As Caleb has gotten older, he’s taken on this responsibility and now, there’s no need bc everyone knows. He’s the kid that gets to use his phone during class and his peers are there to support him when a substitute challenges it. No one sees it as unfair.

She’s nine now, so is that third or fourth grade? For Caleb, those were pretty pivotal years in self care. In third grade, he had a special phone installed in his classroom so he could call me, instead of working with the nurse and in fourth grade, he started using an iPod to text me during the day. He stopped going to the nurse for the most part. That was after living with it for years so I know it’s different for you and your daughter, but definitely look for her cues to take things on herself, and use the current technology we have to its full advantage.

As far as getting through emotional bumps, connecting with other parents and other people with t1d is what got me through it. I “know” a lot of people online and have made great friendships and they are the only people who really get it. My local non d friends can listen and empathize, but really, it’s not very helpful.

[greta_LA]

Thanks so much, Lorraine. I appreciate your perspective. Yes, a benefit to Mia of my living with it this long is that I let that perfection thing go looong ago. Judgmental words and language were common back then, so that’s one Jong on which we’ve been vigilant.
Since I am so open about my diabetes, and Mia is an outgoing and open kid anyway, we’ve been very forward in presenting it and talking about it with her classmates and other kids. Two teachers at her school also have type 1, so that is an increased safety net as well as amazing for Mia and her cohort to see. “Big Mike”, who is in charge of everything on campus, sat in the kids’ circle when Mia presented to her classmates, and later showed the kids his omnipod. It was a beautiful thing.
I’ll reread your note and give you a more thoughtful response, but thank you so much for taking the time to write. Sounds like Caleb is doing well!

[Lorraine]

Well that’s pretty darn awesome! Yay for Big Mike!!

[Stuart]

Hello Lorraine:
Hummngh. I am a T1 from a time BEFORE any technology even existed. The kind of flexibility you or I had is something I passionately believe we m-u-s-t maintain and require, not just from our children but for ourselves as well.

I don’t know that “guilt” will help you or her? I can understand the feeling and offer perhaps a different approach to consider??? If you meter breaks, or you run out of strips stores are closed, etc. will you panic, freak out…

Missing the technology, having none is not and was not the end of the world! Inconvenient, scary maybe (???)… but zero to panic or upset yourself over.

When I had a pump I was trained, trained for the worst possible case scenarios by the trainer. I was given the math used for my daily doses if/when the pump started smoking and broke. Oopsey lancet gun is broken, sorry meter got wet, only have 4 strips and the pharmacy burned down… all kinds of ~ohhhh %€_¥{~{>_%#= …~ scenarios

I had solutions coming from what some call(ed) the “dark ages”. Many did not. What I’d like to suggest is perhaps you should play those scenarios with yourself, with her and see what you build. See where her head is at… enforce a little independence. And then do that given situation in real time

Cover the meal only would be my basic answer to that situation.

She wants to be off, you want to remind her what OFF feels like… sounds like a planned pump vacation scenario to me. The next camp maybe…

No guilt required… “freedom” is not a bad thing sometimes.