Balancing Life, Trust & Diabetes

Let me start this by saying, I’m not an expert in parenting, diabetes management or pretty much anything in life.  Take anything I say with a grain of salt and give it the consideration it deserves. But I wanted to share the way that we work to try to find a balance in living with type 1 diabetes (T1D) and trying to raise a teenage girl who eventually will be doing this on her own.  

In all reality, I would love for my daughter to be fully independent in managing her diabetes.  But it’s a lot of work and, in my opinion, too much for a child to tackle on her own. The short and long term risks are too great for me to let a 13 year old do this entirely on her own.  

We try to work together in a way that allows her to live a full life while ensuring her short term safety and long term health.  If she would show that she could manage her diabetes in a way where she wasn’t consistently running too high or constantly treating lows, I would let her take the lead.  But she has no interest right now in bearing the full weight of what it means to manage T1D.

So I do the heavy lifting, at least to the extent that I can.  It’s still her body, her diagnosis and her cross to bear. While I lose more sleep and think about it more, I am sure it probably harder on her than it is to me.  

My goal is to keep her blood sugar in range and as close to her target as often as possible.  In part because of the long term impact of high blood sugar, but also because I don’t want her constantly feeding the insulin with carbs to treat the lows.  

But sometimes, I can be too much and she’ll tell me she needs me to back off.  So I do.

Other times, she tells me that she needs me to fully manage on her behalf.  So I do.

Parenting a teen with T1D is hard.  Here’s a glimpse of the things we are trying to balance:

Giving Her a Voice

Our daughter developed T1D when she was nine years old.  When we went in to the hospital, I made a promise to her that I wouldn’t let them ambush her with needles. Any time a nurse came to test her blood sugar or inject her with insulin, I made them wait until she was ready and told them they could do it. That’s not to say she didn’t cry or that she didn’t try to delay, but it was important to me that she maintained something that felt like control when she was coming to terms with the realities of T1D.  

Her pump, her choice.

When she was ready to start using an insulin pump, I knew I was interested in either the Animas Ping or Omnipod based on the feedback I’d gotten from other T1D parents.  For me, there were pros and cons to each, but I was leaning more towards the Omnipod. She felt very strongly about using the Animas Ping. She was able to articulate her reasons why. My husband and I talked about it and decided to give her voice weight in the decision making process.  Afterall, she was the one who was going to wear it and it was an opportunity for her to feel like she had some ownership and control in what was happening.

Because of her age when she developed T1D and because my goals for her include increasing independence (not just for diabetes stuff, but for life in general), it’s always been important to me to let her have a voice in the process. This is HER life, HER diagnosis. I’m just here to guide and support her on the journey.

I find a lot of benefits to using an insulin pump, but sometimes, she wants to disconnect and go back to shots.  The first time she raised the idea, I had a panic attack. Another, more rational T1D Mom reminded me, “It doesn’t matter how she takes her insulin, as long as she takes her insulin.”

It was exactly what I needed to hear and it’s a way for her to use her voice in managing her disease.  

Focus on Being a Kid

I often say that we do “kid first, diabetes second” approach as much and as often as possible.  Diabetes is a lot and it is always present in our life and my thoughts. As much as I say that her diagnosis tilted my world on its axis, I know hers was flipped upside down. So while we are aware of the gravity of the diagnosis, the risks of high and low blood sugar, we chose to focus on trying to ensure that her life remains as normal as possible.    

She’s not a diabetic as much as she’s a bookworm with diabetes.

She goes to sleepovers, eats the same things that the rest of our family and friends do, goes on bike rides or on a run around our neighborhood, went to a regular day camp with her friends – you name it and if it’s important to her, I’ll do everything in my power to make it happen.  

I’m not saying it’s always easy (sleep overs used to cause me a lot more anxiety than they do today) and sometimes I need to scramble to make things happen so she can focus on being a kid.  But I refuse to let this diagnosis be the primary focus of her life.

Focus on Diabetes

I am the primary person who manages my daughter’s diabetes.  I text with her during the day (whether she’s at school, home or with friends).  I make adjustments to her programs, touch base with her when she’s too low or high and do the basics.  It’s not that my husband doesn’t want to, he’s actually very good himself, but with my personality, I need to be in that role.

I prefer to give my daughter guidance when I know she’s going to need it. The biggest time I want to be involved is during meal times, primarily because that’s when she takes in the largest amount of carbs at a time.  If I can work with her around meals, we have the best chance to stay close to our targets because her carb counting skills just aren’t there yet.

I also will give her guidance when I want her to push extra insulin when she is out of range.  I prefer that she not make this decision on her own because let’s face it, too much insulin can be dangerous.  I’ve learned how to monitor her Dexcom and am usually able to help her stop a rapid rise or get her back into range sooner than the standard pump settings would allow her.  When it comes to extra insulin, I want to be the voice of that decision.

I end up talking with her about lower numbers because she’s prone to ignore her Dexcom alerts, not always feel the symptoms of hypoglycemia and because she tends to undertreat sometimes because she’s afraid of a rebound high. Along the same line, she isn’t very good at calculating the number of carbs she needs before gym, swim or other physical activities either.  

I tell her when to do temp basals because I have a better understanding of how I expect them to work for her.  

If she would take more initiative, I would let her as long as she was doing it safely and, at least initially, communicate with me about her decisions.  Since she doesn’t, I stay more involved.

Independence in Management

All of that being said, our Endo has an expectation of what kids her age should be able to do and we both encourage her to be as independent as possible.  What does that mean?

Her idea of a special treat!

She does not have to ask me or tell me before she eats. She eats what she wants, when she wants. With the exception of some meals, she can manage her insulin for snacks.  Oftentimes if I see a spike on her Dexcom, I’ll just double check with her to see if she had a snack and confirmed she bolused. I may tell her to push a little extra insulin.  But I don’t police her food or tell her she can’t have things (side note: we do have some expectations in our house – like fruits, veggies and foods from the fridge are preferred over things from the cabinet, and not excessive amounts of junk food – but that applies to everyone, not just her).

She’s allowed to go to the mall with friends, go to sleepovers, ride her bike to the neighborhood park … do all of the things that an independent kid her age also gets to do.  

She checks her bag to make sure she has what she needs as far as gear and carbs. She is able to change her pump and her Dexcom sensor on her own.

She knows how to treat lows and sometimes when I suggest one thing, she will tell me what she knows her body needs at that moment.  

Parenting Overrides (Non-negotiables)

That being said, there are a few things in our house that are non-negotiable.  

Basic management is always required. She does a lot of things independently, but along with that is the expectation that she will do a blood sugar correction and cover her carbs.  Do I expect perfection? Absolutely not. I don’t even expect that of myself. But I do expect that if she wants to be independent, she will do the basics.  If she refuses to manage the basics, she loses independence.

When she needs a break, she doesn’t need to rebel to have me step back in and take over for her, she just needs to tell me that she needs it. My job is to support her and sometimes that means doing more than I normally do.

Remember how I said that she sometimes likes to take a pump break?  While I would prefer her to be on an insulin pump, I also want to respect her voice.  My only requirement is that she is willing to take the insulin she needs.  What often happens is that a couple of weeks after being back to shots, she’ll start “forgetting” to do injections.  We can obviously see it when it happens, and work to get back ahead of it, but it comes with a reminder that if she “forgets” to do shots, she’s going to have to put a pump back on.  Insulin is not optional.

As much as I can be on-board with her taking a pump break, wearing a Dexcom continuous glucose monitor is non-negotiable.  It’s a critical piece of technology for how we manage her care and is the reason that I am comfortable letting her go to sleep overs and have more independence.  Since she’s started using it, the only times she’s taken it off is when she’s been at her diabetes camp and that was only because of the policies they had at the time, because she couldn’t put a new one on and because I couldn’t see the data (or intervene) anyway. But for daily life, we have access to it thanks to our insurance coverage, and it’s not optional.

When she’s at sleepovers, she sometimes has to make hard decisions sometimes.  I am fine with her sleeping at a friend’s house, but I am not always a bolusing-ninja.  I can do really well a lot of the times, but there’s a lot of things I can’t navigate as well as others can. I’m okay with her blood sugar running a bit higher for one night at a sleepover than it would if she were home, but I have boundaries that we consider to be safe.  One time at a sleepover, she asked me a question and I gave her guidance. She not only ignored the guidance, but she made a decision that created a situation that I wasn’t safe and I was not comfortable leaving another parent to deal with overnight. So at almost midnight, I went and picked her up. If she wants the privilege of sleepovers, she’s got to be able to be safe.

Want to go run around with your friends?  Whether it’s at the mall or our neighborhood, she’s got to carry the basics.  At this point that means her phone (for her Dexcom) and carbs.  

Trust isn’t negotiable.  I totally get that mistakes happen, sometimes she just forgets to do a bolus (which might happen once every 2-4 months), but that doesn’t break my trust. I want to give her as much independence as she can safely manage, but if she breaks my trust (by lying to me about what she’s done or intentionally neglecting to do the basics), I pull back her ability to be independent. Fortunately, it doesn’t happen often.

This idea of “non-negotiable” isn’t new to our kids. There are a lot of things in our house that fall into this category that have nothing to do with diabetes (like helping with chores and other normal responsibility stuff).

Balance

We work to balance the philosophies of giving her a voice, encouraging her independence and living with a “kid-first” mentality with my focus on her daily management and our non-negotiables.  We’ve found a pretty good balance overall. Her most recent A1C was 5.7 and we achieved that together.

When she’s ready to start taking on more of the responsibilities, I will support her in that decision.  We have plans for things that we are going to do this summer to work towards increasing her responsibility and independence.

I’ve gotten some feedback that I am too far up my kid’s pancreas and too controlling.  But I disagree, because I know my daughter isn’t ready to fully do this on her own. Even with me being involved, she still shows signs of diabetes burnout.

Diabetes sucks and it is not fair by any stretch of the imagination.  I’m sure there are times I could back down some, and when she needs me to, she tells me. I can absolutely back off and if her A1C increases by 10%, she’ll still be in a good place. I recognize that and know that we have room to give.  

Finding balance is a personal journey because we all have different standards, needs and expectations (and let’s face it, insurance benefits). Some teens are willing and able to have more responsibility than others. For our family, we have found a balance that gives her the same experiences as most of her friends and an amazing A1C (not that that’s all there is to diabetes, but I hope you get my point).

One thought on “Balancing Life, Trust & Diabetes

  1. I love this. As Lucas was diagnosed at 20
    Months old and is only 4 years old still it’s still so hard to visualize a time where he will be taking a part in his diabetes management. I don’t even know where to begin teaching him about his diabetes. For now he knows he needs insulin, he gets gummies for
    Lows , we carb count food
    Before he can eat it and he needs his Dexcom and fingerpoked.

    Like

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