Mom Wants A Diabetes Cure

Wednesday, October 24, 2007

Hang Ten

Manny (of I need to tell you who he is) sent out an email asking parents to let their kids speak out about having diabetes by printing a word on their hand that describes how they feel about having it.

After Brendon came home from school today, I asked him if he wanted to participate and he said yes!

He offered up the word: annoying.

Yes diabetes can be quite annoying, I thought to myself.

But, Brendon's reasoning came from a different place.

As much as it is wonderful for kids at school to be curious about his diabetes and lobbing questions at him about what it's like to have it as well as about his pump, he gets annoyed with having to answer them all the time.

I agreed that it's annoying to have to answer the same kinds of questions all the time like that, and I suggested a plan to help with it. He wanted to ask his school nurse about it, so we'll see how it goes. I'll post about it if it ever comes about.

Later on, I really wanted to know...what does it FEEL like for him. I needed profundity from him because diabetes is a deep, emotional thing and being that I often want to crawl into his head and experience how HE'S doing with it emotionally, I encouraged him to share another word with me.

He shrugged his shoulders, "I don't know. Nothing."

"You don't feel much about having it?"

"No. I just have it. I don't know."

And he continued flipping through a book he was reading.

He's had diabetes for the majority of his brief seven years of life. I've written about this before: Diabetes just is for him.

He's continuing to ride the wave, dude.

Life for him isn't about agonizing over having diabetes.

Life for him is all about wearing his Mets baseball cap and his Jets jersey all at the same time to school so that he, in his words, can break the power of the Red Sox and the Patriots.


  • This was a really intereting post b/c it shows so clearly how a diabetic child perceives his sickness and how the parent of the child sees it! You asked Brendon, beyond his being annoyed, what he FELT about having diabetes. And he said, "Nothing". Honestly, I don't think he is hiding anything from you! Parents to a diabetic child don't really get this! You have it. You have to live with it, but you do not emotionally blame anyone else for it. You are just pissed at having it! In the beginning I know I tried to say, "Forget it! I don't have it! I will not accept it! I will not take these horrible injections." My Mom just left the room and said I could sit as long as I wanted on that soffa, but I wasn't allowed to leave that spot until I took my shot! Finally I did the injection and went on. Kids take a very practicle approach to the whole thing. I can only explain how I reacted - and it is very, very clear in my mind today even 45 years ago! I remember exactly where this confrontation took place. Chris brought up this question too in a recent post. And what did Emma do? She just stuck out her hand for the bg test! See what I mean? The whole thing is really harder on the parents! I believe that. Later, as the diabetic grows up, other feelings of guilt and blame DO come into the picture. When we try and feel we always fail - that is when we start blaming others or not liking ourselves...... most often not liking ourselves! Guilt and blame and the fear of complications come later. I am just trying to explain b/c I think you want to really understand. And maybe Brendon will perceive it differently from me.....

    By Blogger Chrissie in Belgium, at 10/25/2007 2:40 AM  

  • Thank you for the insight! But what I zoned in on is when you said kids take a PRACTICAL APPROACH. That is so true. He's so matter of fact about it. He knows the management is important and does what he needs to do, but he doesn't put judgement on having diabetes. I hope that carries through for him in later years.

    By Blogger Shannon, at 10/25/2007 7:12 AM  

  • Great, great post. I'll have to see if Charlie wants to do this.

    I can guarantee that Charlie will say something similar to "nothing."

    They're amazing, these kids. We're lucky that they have no interest at the moment to internalize it. Why would they? All they want to do is have some fun. Blech! Think I just quoted Sheryl Crow.

    By Blogger Carey, at 10/25/2007 9:09 AM  

  • Seems like there's comfort in that - for you - you know, that it just is for him.

    By Blogger Oh, The Joys, at 10/25/2007 10:41 AM  

  • Carey,
    I got the feeling he's not the only one.

    That's exactly it. If he had a hard time coping, I'd be ripped to shreds. And I think by me staying steady, emotionally, it helps him too. We help each other really.

    By Blogger Shannon, at 10/25/2007 11:03 AM  

  • Brendon is adorable and amazing. I agree that mostly other people (little kids and inquiring minds) make a huge deal about diabetes and everything that goes with it. For those of us living with it, it becomes just something that "is". It's not bad, it's not good. We wish it wasn't around, but we will deal with it and keep living until there is something to fix it.

    By Blogger Jillian, at 10/25/2007 1:11 PM  

  • I had to go to a family thing last weekend and one of my Aunt's asked how I was dealing with "it". I told her it's just like brushing your teeth - nothing you can do about it so you either get good at it or you're screwed; your kid has the right outlook already; too bad I had to spend 14 years getting hit in the head become that smart.

    By far the most annoying question "does it hurt?" about the finger pricks - no it feels freaking wonderful to stick a needle into my finger to draw blood 15 times a day, really it's lovely; I agree with your son.

    By Blogger Wingman, at 10/25/2007 1:13 PM  

  • Thanks Jillian...and my sentiments exactly.

    Next time tell them to stick their finger out and poke it. If they're really that curious, they'll be willing. If you don't like the person, crank up the lancing device to really give them the full experience.

    By Blogger Shannon, at 10/25/2007 1:27 PM  

  • And put in a new lancet. ;)

    O's very matter of fact about her diabetes, too. She's had it for 10 years and doesn't know anything different. She doesn't agonize or cry or complain about it, she just deals and moves on. I try to be that way about it, too.

    I'll have to ask her if she wants to take part in this.

    By Blogger Major Bedhead, at 10/25/2007 3:37 PM  

  • yes, my son is very much matter of fact about it too - and I've not yet done the "hand" because I really don't think he gives it much thought. I do all the diabetes thinking..and I guess that's how it should be.

    And sorry but I've just sprinkled red sox dust all over your blog. lol

    By Blogger Michelle, at 10/25/2007 3:57 PM  

  • You know, it's comforting to hear from the adults that they are really OK with it, but to hear it from your own kid, must really help.

    But, the word Riley picked was "sad". That didn't comfort me too much.

    By Blogger Penny, at 10/25/2007 4:19 PM  

  • Damn Shannon - he's so cute! I love that picture. Excellent word too ... Diabetes is annoying.

    I'd have to agree with a lot of the other parents who have been commenting. It must be a relief for you to hear him say it's annoying - and nothing more. I think we do all the fretting and worrying - it's a part of them and who they are and they just go about their lives with it.

    Kids never cease to amaze me :)

    I'm about to post a video I just did with Danielle on my blog. I didn't get very far with her lol - but then again - conversations with 3 year old are very vague anyway ...

    By Blogger Jamie, at 10/25/2007 4:54 PM  

  • Shannon, (sorry, 2nd comment) After reading this, and still not having done our own hand picture, I just asked my son (7) what word he'd put and you know what he said? annoying!

    I found it so funny that he picked the exact same word.

    So 2 kids find it nothing but annoying. We could start our own project. The annoying diabetes project.

    By Blogger Michelle, at 10/25/2007 5:41 PM  

  • Penny,
    That would break my heart. Knowing that Brendon felt anything but happy would put me in a deep funk.

    Danielle is frikking cute. And thanks about the compliment about Brendon :)

    That's so cool that your son is the same age. Yes on the project, because diabetes is annoying all the way around.

    By Blogger Shannon, at 10/25/2007 6:20 PM  

  • annoying, indeed.
    but it's true--not knowing anything else, really, it just IS what it is. Thanks for this post--I enjoyed reading it very much. Your son is spot on.

    By Blogger Amylia, at 10/29/2007 8:09 AM  

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