A family living well with type 1 diabetes.

I try.

I sit quietly with my cell phone to my ear, listening while Jenna takes instruction from her support worker on what numbers to program into her pump to give herself her morning snack bolus at school.

“Okay. You are going to eat 36 carbs, so make that number a 36. Three – six.”

“Okay. Three – six?”

“Yep.”

A few seconds pass while Jenna presses the up button on her pump. When the pump flies past her goal (the numbers tend to get away from you if you just hold the button down which can be frustrating) she presses the down button to make the number what it needs to be.

“Oops — You went past.”

“I know…”

“THERE! That’s it. Okay, now you press OK. Good. Now you are going to enter your BG. What was your BG, Jenna?”

“14.6.”

“Right. Good job. Okay. So you make that 4.4 a 14.6.”

“Okay. 14.6.”

“That’s right.” More time passes and I listen to the din of children in the background chatting and laughing while they eat their snacks as Jenna toggles up to enter her rather high pre-snack blood sugar reading into her pump. The seconds start to feel like minutes. I know Jenna also hears the other kids — her friends. I know she wants to join them.

“Oops. You went way past, Jenna. Okay. Focus, my friend.”

“Ooops!!”

I hear a sigh of frustration from my little girl. I feel my jaw muscles tighten and I take a sympathetic deep breath for her. I talk to her in my mind. I don’t want to add to the frustration by chiming in. Just stay calm, Jenna. Focus.

Then Jenna’s support worker gives further encouragement,”C’mon, Jenna. Look at your pump. You’re almost there. 14.6.” I imagine Jenna is looking back at her classmates who don’t have to jump through such tedious hoops before they eat their snacks.

Then, in frustration, Jenna blurts out, “Why don’t you just do it?”

Her good-natured support worker retorts, “Ha! Because it’s your job, missy!”

And there it is.

It’s Jenna’s job to give herself her insulin, a life-saving (and potentially lethal if overdosed) drug. She’s five years old and she must do this. She doesn’t know that her support worker isn’t allowed to even touch her pump, let alone give her insulin.

Jenna often doesn’t want to be bothered with bolusing herself for every carbohydrate containing snack or meal she eats. She has worn an insulin pump since she was two years old — far too young to administer her own insulin dose. Oh sure, she would, on occasion press the OK button to initiate the actual bolus after I or her Dad had done the programming. But Jenna has been spared the monotony of bolusing for most of her diabetic life. She has been doing her own snack boluses at school for several weeks now and overall, she has rocked it. And I know that the more she does it, the easier it will be and the faster she will get at it.

Even still, no matter how fast she gets at it, it’s not what most people have to do before taking in nourishment. And it’s always prefaced by the ubiquitous blood sugar check. There are just so many damn HOOPS! Is it any wonder I worry about what the future holds?

I remember in my nursing training, when we were covering diabetes, we were taught that during the teen years it is common for teens to rebel when it comes to the necessary minutia they must constantly carry out to stay healthy. It is so common, in fact, that the training we received in caring for teens with diabetes focused heavily on our verbal interactions with them and the psycho-social implications of this disease on this particular age group. And then, as if to punctuate this theory for me, during my corresponding practicum for this unit, I was assigned to a teen with diabetes who had been admitted with diabetic ketoacidosis and was undergoing further patient teaching as part of his recovery.

It was a long time ago, and I don’t remember much detail, but I do recall getting a sense that this teen was struggling. The struggle was just as much emotional as it was physical. He seemed sad. Perhaps even depressed. I felt so inadequate. I felt like I knew nothing of what this young person was going through. I felt ineffective and in over my head. I was only in my early twenties at the time and this diabetes deal that I was just learning about seemed like such a heavy burden for any person! For a teen? It must feel like the biggest bullshit, shitty hand anyone could ever be dealt. How on earth could I be of any help to this person? I was young, in training, and knew nothing of the ever-present, constant, worrisome, unpredictable, obtrusiveness that is diabetes.

I was a good student and I imagine I did my best with this patient and tried hard to NOT sound like I was reading from a script in my verbal exchanges with him. Honestly, I think I was relieved when my assignment changed. But the sadness that was so tangible stuck with me. I knew this young man was dealing with demons I knew nothing about.

And now here I am, the mother of a child with diabetes. I don’t need to tell you I have my fears. I work hard at keeping them in check. I try to look at my past professional experiences with diabetes not so much as warnings of what lies ahead but as wisdom, if put into proper perspective. I keep reminding myself that just because it is common enough to be taught in nursing theory classes and just because I happened to be assigned to a teenager recovering from diabetic ketoacidosis due to lack of self-care from typical teenage rebellion, doesn’t mean my daughter will do the same thing.

But I know how hard this disease can be. I know how exhausting and maddening it is. I know how much it can mess with your head. I also know how much being a teenager messes with your head. I’ve seen these two forces collide. I’ve seen what can happen. Teenage years + diabetes = the perfect storm for noncompliance (a term I now loath but is all too common in the medical world) and disaster.

I try to not worry so much about the future. I read about other people’s experiences and try to glean from them what is useful without causing myself too much unnecessary, premature aging worry. I try to stay positive. I try to have faith in myself and my amazing, strong, smart little girl. I try.

… but it’s hard sometimes.

Comments on: "I try." (7)

  1. Wow. I can’t believe that a five year old has to be responsible for bolusing on her pump. What about emergency site changes or injections, if they are necessary? I see this is the way a lot of states in the U.S. are trending because of the need to cut costs….. and they are cutting costs by getting rid of the school nurses. Unacceptable. Although it takes years to get new laws in place, and may be too late to help your child, I hope you fight the system. Re diabetes burnout… It will happen. We have a teen; but still do almost all of the diabetes care when she is home, including site changes. She is responsible while away from home. So far she is doing very well and is very responsible. If parents continue to assume a lot of the burden, while ensuring the child can still take care of herself when away from home, I believe extreme burnout resulting in noncompliance can be staved off during the teen years, or at least occur past the mid-teens (late teens and college age). Because of the extreme variability during puberty and early teen years with all the growth hormones in full swing, making management extremely difficult even for the parent, I think it’s a good idea to maintain control until the late teens. Plus, it allows a teen to be a teen, at least part of the time. A lot of endos don’t agree with this, however, it works for us.

    • If Jenna needs an emergency site change or injection, it is up to us — her parents — to arrive at the school and administer these interventions. No one at the school even knows how to, nor are they allowed to administer glucagon if Jenna needs it! Yet everyone knows how to administer epinephrine to a child in anaphylaxis. There are many things in the school system regarding the health and safety of children with diabetes that need to be looked at, for sure.

  2. Denise aka Mom of Bean said:

    Hard, indeed!
    That’s awesome that she’s starting to ‘do’ the bolusing, but totally SUCKS at the same time. So glad that there is some one there to oversee and help her…even if it’s ‘hands off’.
    I feel for you!!!

  3. You just transported me back to a five year old Joe. He had NO PATIENCE for how “slow” the nurse was with his pump and started bolusing in K-garten too. It is bullshit…the hoops…just to eat…or to be active…or during illness…etc. It has become so routine that at times I forget. Love to you and Jenna. And, I too on being wary of the teenage years.

    • Yes, I forget too, until I need to teach it to someone else or turn a particular task over to Jenna.

      Love right back atcha, Reyna. Both to you and Joe. xo

  4. It sounds like she’s doing an awesome job so far! It’s a lot to take on, especially if she’s used to others doing it for her, but it’s such an important step do be able to do it alone.

    On a side note, is Jenna on a pump that has a matching meter option? My son has the medtronic VEO and it can receive wireless transmissions from the contour link meter. This means that as soon as he tests, the result is transmitted to his pump screen and he just has to click “act” and enter the carbs. Not a huge deal, but it’s one less number to enter and one less chance for error (cause those numbers do scroll fast!!). Plus it helps him to get outside with his friends, or start eating his lunch a few seconds faster…Every little bit helps, right?

  5. augh, the HOOPS, totally. my kid’s a bit older and like reyna’s joe above, she’s irritated if anyone besides her tries to program her pump because, as she says, we “are WAY too slow”.

    thanks for sharing how your encounter with a teen post-DKA affected you so many years ago. life, huh?

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