Wednesday, February 18, 2015

Letting go and letting her

I'm a control freak.  There's no denying it and I have no problem letting my control freak flag fly (within reason, of course... I do my best to not let it affect other people).

Elise was diagnosed at 12 months old, so obviously either Fred or I were in charge of everything at the start.  For the most part I did most of it because I wanted to.  Because along with being a card-carrying member of the Control Freak Society, I also have some type A tendencies.

These two things can be both a blessing and a curse when it comes to diabetes.

I constantly read and try to learn all I could about type 1... but all that information can be scary.

I weigh her food counted carbs down to the decimal point because the accuracy can be crucial... but it can cause meal times to be stressful and makes me crazy at times.

I study her BG readings and dex graphs, trying to figure out how to dose for problem foods, even keeping a journal at one point hoping I could spot patterns... but it's exhausting and what works one day doesn't work the next, causing this control freak all sorts of rage.

Elise has now had type 1 for over 6 years and is in charge of certain aspects of her care.

She does all finger pokes (except while she's asleep, of course)
Helps set up for pump/dex changes.
Cleans the insulin vial/dex transmitter with an alcohol wipe, along with the insertions sites.
Presses the start button to insert the cannula for the pod.

But part of me has been wondering lately if I need to let go of more responsibilities.  She vacillates between wanting more, and wanting nothing to do with D.  And I struggle with the question, "how much is too much?"  She's only 7 after all.

Sometimes just asking her to wash her hands and check her blood sugar puts her into a tailspin.

"Why do I have to do this and nobody else in the family has to?"

"I'm tired of checking my blood sugar!"

"I'd rather not eat so I don't have to poke my finger again."

On days like these, I offer to do it for her.  She seems tired and over-burdened by the disease and is grateful to have me step in and do it for her.  But then I worry... Am I enabling her?  Will this delay her independence?  What will happen when she moves out on her own and there isn't anyone there to take over?

Other times she is gung-ho about her diabetes care. She wants to learn how to count carbs, even asking me to print up a cheat-sheet of her favourite foods to hang on the fridge.  She wants to check her brother's BG after she checks hers (and the sweet boy always obliges). She begs me to let her fill her pod with insulin.  But again I worry... how much is too much?  She's going to be doing this for a long time and I don't want her to burn out.

Because there are so many aspects of her care that I will slowly be doling out on her way to adulthood.

Dealing with insurance companies.

Making doctor appointments.

Scheduling lab work.

Managing prescriptions.

Ordering supplies.

Organizing supplies.

Keeping up with all the technology.

The list goes on (and on).

Parents of kids with T1 who are diagnosed at an age where they rely on us walk a very perilous tightrope. On one side we run the risk of raising a child who is totally unprepared to live on their own.  Cannot count a carb or figure out an insulin dose, and is completely dependent on someone to help with their care

On the other, there's the real possibility of them burning out very early on, when they have decades to go in living with this disease.  We must let them be kids first, and kids with diabetes second.

We try to stave off burnout by doing it for them.

We try to teach independence by letting them do it themselves.

It's a dance, and I'm doing my best to teach Elise the steps.


  1. :(
    I know you do an amazing job.

  2. It would be so much easier if there were a manual. No, wait... it wouldn't. But you are writing the book, in a good way.

  3. We have been struggling with this very thing - I believe Isaac is right in the midst of a growth spurt both emotionally and physically, which has been rough on all of us. At times he wants to do all of his care and is super duper helpful, but the next day (snack or meal even) he is like the incredible hulk throwing a giant tantrum about how the unfairness of diabetes. I never argue with him about it, but darn does he yell about it so loudly lately! He's been spending a lot of time chilling out in his room lately. I appreciate you sharing this moment in your families lives, the note was especially a nice tough as we've seen the same attitude about d at times lately. Anyhow, I hope you are doing well overall in your little corner of TX :)

  4. My daughter was also diagnosed so young (9 months), and is only 5 now.... This post rings so true for us!! A dance for sure. Thanks for sharing. And her artwork about breaks my heart!

  5. you are both so beautiful, inside and out. I feel you are doing the best thing for her, which is following her lead. that may change from day to day, and as long as you stay flexible, you're rocking it. imho, obvi.


  6. " We must let them be kids first, and kids with diabetes second." this is something important that I admit i sometimes forget. Thank you for the reminder. Very well put.

  7. Im always amazed what the younger diagnosed kids take on so Maddison wasn't diagnosed till age 6, but now at age 15 I often wonder if I should push her more. Truth be told, I never really pushed her to do anything if she didn't initiate it first when she was under the age of 10 or so (ok, not entirely true) but everything just kinda fell in place, age appropriately. Some kids thrive with more responsibility while some get overwhelmed. And isn't it to weird that day to day they feel different wanting more help or less help? Such is the life I guess! You are an awesome D Mom Jo!!!!

  8. So I'm cheating and #dblogcheck-ing on this post instead of today's because I meant to comment when I first read it and was today.
    I don't think there's a right answer to this, and I find that reassuring. So far we've let the now-13-year old take the lead on initiating what she's ready to take on. She's still not doing her own site changes, but is considering it in the coming weeks because it means she might be allowed to go a little further from us (day trips with friends, etc.). I equate it with potty training frustration when you just keep telling yourself they're not going to be going off to college in diapers!

  9. I am also a card carrying member of the control freak society too and this issue weighs heavy on my heart as well. Our type 1's were so little at diagnosis that it just became natural and necessity for us to take the lead. I just keep telling myself he will get it all one day and for now I will continue the day to day until then. Elise has the best! xoxo

  10. Elise has already been a victim of burnout... You blogged about your heart-to-heart when she came to you about "wanting to quit life"... It's sad but true, every diabetic will burn out many times... Just be ready to be her Sam...


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