Tone Blind

This cute picture of a dog is not illustrative of anything, but might soften the blow of the horrible conversation detailed here.

This picture of a puppy is not illustrative of anything, but might soften the blow of the horrible conversation detailed here.

More compelling issue than sex ed: how tell T1D child diabetes complications/rumors about complications, before learn on the street?

BUBS: Blind people can still see, right?

BIGFOOT: Well, people can be legally blind and still see a little bit, but not very well

BUBS: But most blind people can still see sort of, right?

BFOOT: I don’t know. I don’t think so. Maybe just like…shadowy movements

BUBS: If I am blind, will my whole eye turn white, even on the bluish-hazel part?

BFOOT: No. I’ve never heard of that

BUBS: But my eyes will look scary and I’ll have to wear sunglasses, right?

BFOOT: You mean if you were blind?

(This is where the invisible twin who expresses what I’m feeling started to keen and barf.)

BUBS: (nods)

BFOOT: I guess some blind people’s eyes look different, and unfocused, so they wouldn’t really be looking right at you while they were talking, and that might bother some people, so the sunglasses sort of take the unfocused eye issue out of the equation. But I don’t think their eyes are necessarily scary

BUBS: (looks down)

BF: Why are you so curious about blind people today? Did you meet a blind person or a person with eyes that scared you?

BUBS: No, not that

BF: Did someone say something to you

(Here’s where I blew it:)

about diabetic people going blind?

BUBS: No! (Looks horrified.) Diabetic people go blind?

A cute baby yawning. Cootchie coo.

A cute baby yawning. Cootchie coo.

Then Bigfoot ramble hrrrm, well, hunnnh, you might hear something about diabetes and blindness being related but…not need worry; not your problem—only if person high BG all of time, for long time, not take care of self, not count up food/bolus insulin, sure ramble on much too long, then but you take such good care of yourself…but now child afraid. Shit. This morning Bubs wake up call from bed: Mom?

BFOOT: (Responds from bed) Yes?

BUBS: Could I have laser surgery for my eyes when I am blind?

BF: You won’t be blind

BUBS: But if I am, I don’t want anyone to cut my eye with a scalpel

BF: Not happening

Ugh, feel terrible. Need address head-on with facts & if so which ones? Maybe just give information upon request, as experts recommend re sex; not want give child more than can handle. Crap. Just realizing probably, maybe T1D children think along lines of:

  • I have diabetes
  • I have to have insulin or I will get sick and die
  • I have to have sugar if I have too much insulin or I will pass out and die
  • I hate hospitals, and I’d probably hate being dead, so I will do what my parents tell me

This probably enough information. But what if Bubs overhear friendly clod share fond memory blind, diabetic grandma or  diabetes blindness story on radio–better know in advance than snowball worry/figure out alone with internet.

Advertisements

21 responses to “Tone Blind

  1. As if it weren’t hard enough figuring out when to tell them about condoms or Luke being Darth Vader’s son… We’re still at the early stage of the conversation: “What happens if I go low and don’t get juice?” Um… you fall asleep like Snow White, until someone wakes you with a juice box or special shot… I don’t think you could handle any better than you did!

    Like

  2. mollyjade

    The thing about diabetes eye complications that I comfort myself with is that they can be easily treated in early stages. If you get your eyes checked yearly, it’s something you can deal with and manage. This is an area where I can get really good results (preserving eyesight) for a pretty small amount of work (one uncomfortable doc visit a year).

    A lot of people who have diabetes eye complications are people who don’t even know they have type 2 yet. Their blood sugars are running high a lot and they never have an eye exam until they notice failing vision. (Not a blame thing, just context for all the scary statistics.)

    I honestly can’t remember how I heard about most diabetes complications when I was a kid. Type 2 wasn’t as well-known then. I didn’t start getting “my grandma lost a toe” stories until I was an adult. Maybe I learned at diabetes camp? Or just absorbed the idea from yearly exams at the doctor checking my eyes, kidneys, and feet?

    Like

  3. I am in the middle of this dilemma right now, too. My 8 (almost 9) y/o is fighting back with the nurses at school and not taking BG testing seriously. He just started this phase of snarky attitude and rebellion about it all… especially at school, not so much at home. I want so much to tell him the real consequences, but he is too young to ‘really’ understand them so I don’t think it will have the impact I am hoping for… he may rebel more! I am kind of at a loss about it right now… He knows the low consequences and that he can pass out, he also remembers going to the ER last year when we couldn’t get BG down and he was vomiting. He hooks up fake IV drips to his stuffed animals when they are high – that’s his connection to high BGs that make him ill. We have talked about slow healing and the importance of always taking care of his feet and any cuts, etc… If this is how he is before the terrible teens, how the heck will pre-teen and teens be!!! Thanks for sharing your experience….

    Like

    • oh no, obi wan! i can’t imagine what i will do when this happens to me. and i know it will happen eventually.

      taking such good, tender care of his stuffed animals must be a good sign.

      Like

  4. I think you had the answer when you said “as experts recommend re sex”. Talk to him about that. It’ll surely distract him from the blindness thing … at least for awhile. (The risk is that he may never want to talk to you again…)

    I honestly don’t remember entirely how I learned of the link between eye problems and diabetes. It was only until years after, when I was discussing a doctor visit where I had my eyes dilated with a friend (the discussion was with a friend, not the dilated eyes) where I learned that not EVERYONE has those kind of appointments. I came home and asked my mom if other people have those kind of doctor visits too, and she said no, it’s only for people with diabetes. But I don’t know where the conversation went from there.

    Like

  5. What? Luke is Darth Vader’s son???

    When I was diagnosed at 12, Joslin still had an inpatient Diabetes Treatment Unit. I got to meet people who had eye complications and were being helped there. It didn’t make me feel better about it, but I could see even back then that there was a lot doctors could do to help us. Bubs seems pretty smart for his age. I’m sure when it’s time to have the talk, you’ll know what to say.

    Like

  6. Pancreastic Mom

    I’m with you in that mostly I feel like the fact that they need insulin to live, and sugar FAST to live if they get too low is quite a lot on their plate at such a young age. But also that you want to be the one to explain it before they hear someone else give them a horror story. I don’t guess I’m quite ready to throw all that on my sweet girl yet…I grab the remote and mute as soon as that verbally graphic commercial about diabetic nerve pain (for Lyrica?) comes on.

    Like

  7. All I wanted to say was that I can’t believe Luke is Darth Vader’s son…but someone already said that! This is difficult at our house too…but further down the journey. Our son is 14 3/4 (so you know exactly how much of a teenage he is) and diagnosed at 13 with a 9 month honeymoon where all his bgs were in range. He is a typical teenager. He thinks he knows everything about everything. We want to blow his mind with horrible internet diabetes related complication photos…but we don’t. We keep talking. Hoping for the next refresher class at the diabetes clinic. And praying it all sinks in and he doesn’t lose his mind.

    Like

  8. Julia

    They are going to hear about it elsewhere so I believe addressing the issue honestly is the right thing to do. And, of course, all the questions Bubs asked about being blind led you to put 2 and 2 together. You’re being pro active. Our DD was 8 when diagnosed and she definitely knew about complications by the age of 10. Kids are on the computer a lot these days and they are going to find things out. I would guess a child who has been on the Dexcom shortly after diagnosis would not ever have complications, particularly since the artificial pancreas will be available within five to ten years as well as other therapies. This is the first generation of Type 1s who has had these technologies available. That changes the big picture. If the eyes are examined yearly, dilated, complications can be detected early and laser therapy is available. Same with microalbinuria. ACE inhibitors can be started and damage stopped. Kidneys should be tested five years after diagnosis, though a lot of pedi endos don’t do it until adolescence. I strongly doubt that these complications will even occur in children who are so carefully monitored. I think the long-term picture is good. I hope Bubs does not worry.

    Like

    • I was so happy to see the 80-year (dianosed at 8!) medalist video from Joslin today! The medalist a say the same things you’re saying, “We didn’t have all of the wonderful things kids have now. They will be fine! Look at me! I had to boil my urine over an open flame!”<–not a direct quote

      Like

  9. Pam

    Oooh…I probably would have assumed the same thing in your shoes and tried to address it too. What’s done is done. I think the talking about sex analogy is a good one for future reference.

    But there’s also the talking about terrible news analogy, like when I intercepted the newspaper yesterday morning and mentioned the horrendous tornadoes in Oklahoma before she saw the pictures on the front page*. I’d rather her hear it from me and be able to put my own (hopefully) calming spin on scary things. When to do this for diabetes horror scenarios? Hard to say, but definitely with the spin of, ‘you might hear blah/blah is going to happen to you, but look…here’s a story about an 80 year old Joslin medal winner.’

    *For the record, she isn’t an 11 year old news junkie…just the first to open the paper in a search for baseball scores and the comics.

    Like

  10. I think its inevitable that you hear about complications, but the best you can do is have a good response for when your son is ready to talk. I still occasionally go to my parents freaking out about what I heard or read about diabetes complications. The response that my parents would typically give me was the usual, “but you take care of your diabetes and you have it under control so you don’t need to worry.” The problem with that statement for me is that I don’t always feel like my diabetes is under control. My A1c is usually the mid to low 7’s, but it’s not in the 6’s so I worry that maybe the control I have isn’t good enough. What was most helpful to me at least, was the reinforcement that the care that I am doing (even when it’s not as good as I want it to be) is still much better than what leads to many of these complications. It’s a fine line of being able to talk about these complications without scaring someone, but sometimes what you make up in your mind can be much worse than the truth. Good luck!

    Like

  11. Pingback: Lazy Sunday: day one on the books | Dog Goes To College

  12. I think you did a great job handling the topic!

    Complications are the herd of elephants in the room (this is what last week’s Hope Conference was about!). We NEED to talk about them because people with diabetes develop complications sometimes regardless of their control. They don’t always understand why one person develops a complication and another doesn’t. That being said, complications aren’t inevitable and we have to learn (1) how to do our best to head them off, (2) what regular checkups to have, (3) and most importantly how to forgive ourselves and not assign blame.

    So you did fine! If I were talking to him, I’d say that people live loooooong, healthy lives with diabetes and we will all do our best to keep blood sugars in range. And some people with diabetes will develop extra conditions that they will struggle with, not because they did anything wrong, but because it’s such a hard condition to manage. So we do our best. Yeah.

    Like

Please say things:

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Bigfoot say other thing

%d bloggers like this: