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Learn As We Go.

During the discussion at Friends For Life about being a parent with type 1 diabetes, the topic of "telling" came up over and over again.  And not "telling" as in "I'm telling on you, Panc, for being a lazy slab of cellular mass," but more how to tell my daughter about diabetes. 

The people in the session had varying opinions, ranging from having a sit-down discussion about what the impact of diabetes may or may not be to introducing diabetes on a bit-by-bit basis, and all the gray area in between.

I definitely fall into that second camp, as a parent.  My daughter is two years old.  (Technically, twenty-seven months old, thank you very much.)  I don't want to have a formal sit-down chat with her about her mommy's diabetes, because a. it won't matter a lick to her unless it involves Thomas or watering the flowers outside and b. she has absolutely no concept of what "chronic illness" means.  She's two.  Red Sox for the win.  Hopefully. ;)

However, like most kids, she's perceptive.  She's been watching me test my blood sugar since she was able to hold her head up, and she has a sense of what it means to "check my finger" because she's also had her blood sugar checked a handful of times.  She knows it's not a fun moment.  ("That's mama's meh-cine.  Not mines.  You keep it.") 

Lately, she's been asking to see the numbers as they count down.  "Five, mama!  Four!  Three!  Two!  One!"  And when the blood sugar number pops up, she reads that back to me.  "Two eight, mama!"  At which point I correct her:  "No, you're reading it backwards.  Eight two. Eighty-two."  "Eighty-two!  That's nice."  (Every number is "that's nice."  212 mg/dL?  "That's nice."  182?  103?  Eleven million and seven?  "That's nice."  I like that she thinks they're all nice.  Makes me less insane about them.) 

"Twelve!  You has a twelve, mama!!  That's nice."  She looks at my meter and announces the result proudly.

"One hundred and twelve, kiddo.  You have to give the whole number, or mommy will freak out."

She is learning about how the Dexcom receiver and the sensor on my thigh work together, especially now that it's summer and my sensor sometimes peeks out from underneath my shorts or dresses.  "That's Dexcom."  She picks up the Dexcom receiver.  "That's Dexcom, too.  Two Dexcoms!"  Pause.  "Ah, ah, ah!!"  (We watch a fair amount of Sesame Street, and The Count is a fan favorite.)  But last week, when the Dexcom alarmed for a blood sugar over 160 mg/dL, she grabbed the receiver off the kitchen table and said, "Mama, time for check your meh-cine!"  The BEEEEEP!s now mean something to her.

"Diabeeeeeeeetes."  She knows the word.  She knows that all of my medicine bits (the pump, the infusion set, the Dexcom, the sensor, the glucose meter, the glucose tabs ... all the "stuff") are related to this thing we keep calling "diabetes."  She has no idea what it really means (pancreas kaput, etc.), but she is beginning to understand that it makes me do things differently than some of the other mommies. 

My little Bird will make sense of my diabetes breadcrumb by breadcrumb, learning from the information I share with her.  Eventually, as she grows older, we'll gently teach her what to do if Mommy needs help.  She'll understand that I wear certain devices and take medicine before I eat and I sometimes wait a few extra minutes before we play outside, waiting for my blood sugar to come up.  She'll know what she needs to know, but I don't want her to know any more than she needs to know.  The parts of diabetes that scare me will be shielded from her for as long as I can, because there's no reason to make her worry.

My job is to love her.  To play with her.  For my husband and I to raise her as best we can, so that she becomes the best she can.  My diabetes may impact certain moments, but it doesn't change the course of she is.  Or who she will become. 

Comments

This girl is smart! She could save your life someday. Maybe when she's 32 months old. Maybe 32 years old. Maybe she'll figure out how to jump-start the islets. You're doing a great job raising her, and I'm sure she'll make you proud. (BTW, I hope you don't ever *need* a life-saving moment, but if you do, you're in capable hands)

I had to hold my hand over my mouth to keep from laughing out loud in the office. ("You has 12, mama!!") I may take to saying "that's nice!" when I check my sugar now. :)

Amazing how perceptive kids are. My 5 y/o G-daughter went to the fridge and brought me some chocolate milk that last time dexcom was screaming. She also brought 2 glasses. I didn't teach her; she just knows the drill and wanted to help (and get some reward out of it). It worked out well for both of us.

That last paragraph is fantastic and is something I think all parents should strive for!

This was lovely. It made me smile, and that's a lot for a Monday morning. :0)

I'm with Amanda on this one! It was hard not laugh out loud at work. I'd freak out too if the whole number wasn't read to me!

I was at a pool party this weekend and had two very curious little girls asking me about my "bandages." I have two young nephews who know that these are my "medicine" but they've seen it since they were born and my sister is a nurse so it makes a bit easier. Those girls threw me for a loop! I need to find some ways to inform & educate these kids without scaring them! Thanks for sharing!

One thing I will give diabetes: it's a very springy spring board for math aptitude. Birdie knows her numbers at a very young age!

I love this post! It is exactly how we are treating this topic with my little girl who will be 3 in September. She knows the test kit, what my bag for it looks like (ever since the post about pretty bags came out I have switched the kit and supplies to a bag that makes me smile, rather than the boring black case), where to find my snacks and is starting to understand that sometimes we need to wait a few minutes before doing something. Patience is not a big thing for her at this age, but I don't think she is alone in that. :) I also love her response to the bag I keep my spare parts in for set changes. She knows when that comes out she can only watch, but then she pretends to give herself medicine and says she is taking her insulin too. I pray she never needs it, but know that if she does someday it will not seem so odd to her.
I think it is important to expose them to this stuff as they are ready. It helps them to understand that we are all a little different and that it is ok if someone needs to take a few minutes to do something before running out the door. My hope is that as she gets older she will be one of those people that helps anyone with an ailment to feel more normal. We need more people like that in this world.

My daughter is 15 months, and just now "discovering" things about my diabetes. She occasionally sees the Dexcom sensor on my thigh and will tentatively try to touch it - I am proud she is learning to be gentle and hasn't tried to rip it off (yet.) We've already had to teach her to throw away the random test strips and syringe caps she has found and tried to put in her mouth, no matter how diligent I've tried to be about keeping them away from her. Those things multiply, I swear.
I love hearing about Birdy's thoughts and understanding of your diabetes...this helps me gauge how I can teach my little one about diabetes, too.

I have pretty much the same attitude with my kids who are almost 4 and 21 months. I'm just impressed that she can recognise numbers like TWELVE (even if they are meant to be 112!). Now I just need to teach my kids to say "that's nice" about my numbers instead of saying "mmmmm" when I lick my finger after testing!

My niece always used to like to watch the numbers come up.
And now that she's 9 and has a T1 friend at daycare, she's beginning to know what the numbers mean (and it certainly helps that she's uncommonly smart as a whip!)
She is very curious on what it feels like to be low because it happens to her friend.
Last weekend she asked me how many carbs were in an apple and I told her it depends on how big the apple is. She said she wished apples came in a package where it told you.
Like canned rigatoni. Go figure.

Kerri -
Great post from the heart! I think you're doing a great job teaching Birdy about diabetes and on the flip side, Birdy is doing an amazing job absorbing and ingesting what your diabetes means, "breadcrumb by breadcrumb."
You and Chris are doing a wonderful job with Birdy, on every level!
And for the record, I'm a direct product of the "Learn As We Go" approach. As a very little girl I never remembered the "diabetes talk" with my dad and siblings, I just rememberrd that diabetes was a part of our lives as a family unit and that half of the table had to take shots before they ate a meal. And that when dad was hungry, he had to east ASAP.
Lastly, I HEART that picture of your beautiful Bird - SO CUTE!
Xoxo,
kelly k

Fabulous post! Love it!

I love this post - any post with the bird, really.

I saw this episode of This American Life the other day and they interviewed this blind guy, Ryan Knighton, about being a father and about when his daughter finally understood what it means that her father is blind (Prologue and Act 1). The whole story is humorous (there are bears), sad, totally touching, and when I first listened it felt a little like my own future, not the blind part, but the part about that moment when your child finally understands that you are just a little different than she is. And, your post today made me feel many of those same emotions.

Thanks for sharing!

Ah, you have a smart little Birdie.

Troy is mostly concerned with his siter's diabetes when there are snacks involved. :)

One very smart Mama, I say. 2 year olds can only cope with what they can cope with. Beautiful post and a beautiful way to introduce a small child to a big subject. They have to face reality all too soon and the longer we can protect them from that the better. They are innocent for far too short a time. Took me a long time to broach the subject with my ten year old and used a similar method. Worked fine, but she was still worried when reality sank in. x

i love how you write her voice. meh-cine!

She looks so much like you. :)

Hi everyone. I'm not diabetic, but I've just read your responses to Kerri's entry about telling her daughter about diabetes. I don't know whether I was as cute as Kerri's daughter when I was her age, but basically, I am Bird, all grown up (but-still-under-fifty!). My mother, now nearly 84, was diagnosed with Type 1 diabetes in 1936, so I don't have the slightest clue what growing up with a mother WITHOUT diabetes might have been like. Many thoughts come to mind as I read your posts, but I'll offer just a few: (1)By now, I have seen most of diabete's evil and not-so-evil sides. My suggestion (not that you asked for it) is that diabetes not be a family secret. Be matter of fact about it. I'm guessing that unless you, also, grew up with a parent with diabetes, you imagine that your children already know what non-diabetic mothers or non-diabetic fathers are like, and that any deviation from that "norm" (i.e., You) is bad, scary, or mysterous to your child. Speaking as a grown up child of a diabetic mother, diabetes WAS our normal. It never occurred to me that our sickeningly healthy home-cooked meals were part of "BG management," or that my father called my mother from work, virtually everyday, at lunchtime because he was "checking in on things." (Remember, this was in the days before meters, pumps, or even throwaway syringes.)
(2)You might be saddened to hear this, but don't be: Your diabetes is no longer "your diabetes." You are part of a diabetic family. You may be the designated patient, and with luck, the only designated patient, but YES, your diabetes will impact your children's lives, in both bad and good ways. There may be times when your children are scared, but your children may also grow up with a greater sensitivity to how others are feeling. They may be better organized (though I flunked this skill-building opportunity with flying colors). (3)I hear a subtext of fear about "telling." Don't be afraid. If you aren't afraid, your child won't be afraid. Your kid doesn't see you as "my mother the diabetic." Your kid sees you as Mom.

In 2000, I lived with my sister & her 4 year old daughter. That was the first time I'd really been around a child while doing the daily diabetic stuff you have to do. I was panicked, frankly. My sister said, "Tell her what you are comfortable telling her. I trust your instincts." Well that made one of us, but I went with it because it was better than the hide in my room 24 hours a day solution that I came up with.

So monkey asked me questions & I answered them. Sometimes with general terms & sometimes with specific terms. She absorbed it all. She was (and is) smart like your Birdy.

So when I spent a week with them not too long ago, I watched her (now 16) explaining my diabetes to her 6 year old brother. Which gave me a smile & a few tears all at once. We'd only lived together for less than 3 years, but she remembered everything I'd taught her. And she did a VERY good job of explaining it to her baby brother. :)

Birdy will let you know when she needs more information. She's smart like that. :)

My sons were born in the late 1960s when I was testing my urine, using animal insulins, and I did not about carbs. It was so different back then, and my boys did not think about me being "different" until they were in their late teens.

Diabetes mnagement is so much better today, but there are so many gadgets and visible equipment that will raise the curiousity of a child like Birdy. She will be asking you questions soon. What she sees will inspire those questions. She will learn so much that my boys did not learn. That is good!

I just have to say, Awesome Sarah. Thanks for sharing. My grandmother was a type 1.5. I never knew her not to be diabetic. She used animal insulin and boiled syringes. Sometimes I look at my meter now and feel like crying because she didn't have the luxury we enjoy.

When my daughter was in Pre-K she came home one day and asked what diabetes was. I told her that it is when someone has trouble using certain foods and has to rely on medicine to help them. Not a good explanation, but she was only 4. She told me that her friend N's mother has to come to school to give her medicine sometimes. I just said that I was glad her mother was able to come. She and N went all the way through high school together, usually in the same classes. As they grew up together, my daughter and the third musketeer J grew in their knowledge of N's condition. By the time they were in middle school D and J were carrying juice boxes and candy in their purse in case N went low. By high school they were able to count carbs and sometimes give figure insulin ratio's and give shots to N's little sister B (also a type 1) My friend K had 3 babysitters she could trust. They all had K's number programmed into their cell phones. I feel that this knowledge of N and her disease has given my daughter an amazing perspective on accepting that disease is normal and that the people who have them are people, humans who need love and support. I feel like N and B were a blessing in my daughters life. I also feel like it helped my daughter cope when my health began to decline. Having K and J's mother T in our lives helped me raise my daughter. N and J are in nursing school now. D is in college, but asked to be a room mate to a type 1 because she knows what to do. I think that N's condition has helped them all grow into very special people.

I love your posts about Birdy! My daughters are 16 and 13 and they are still asking/ learning about diabetes. I also have given them information as they requested it. My 13 yo has helped insert an infusion set and check my sugar. My 16 yo informed me one afternoon that the "smell" of insulin is my mommy smell to her. That one brought tears to my eyes. I have had to answer some hard questions as they have grown and I have answered them honestly with an age appropriate answer. It is a part of our lives the good and the bad.

It sounds like you're teaching your beautiful daughter more than diabetes. She's picking up empathy, too. Awesome!

You are not going to be able to keep secrets from Birdie... she is smart as a whip. At two she is already bringing you Dex and telling you it's time to check. She'll have diabetes management figured out by the time she's five. Such a cutie pie.

You are so sweet with Birdy! I love how you make diabetes just a part of life, and keep it important at the same time. She's learning to help you, which is awesome. But she doesn't get all the scary possibilities, at least until she should... I really hope I can teach my kids like this someday!

This was awesome. Alaina is becoming familiar with "Daddy's med-cine" as well. The pump, meter, Dexcom, and occasionally the tv remote are all Daddy's med-cine. Lately she's been more concerned about my short-term health ailments. Every time she sees me (or even when I call on the phone), she says "toe....broken!"

I know it is not the same as when it is your own kid but I used a similar method with my niece and nephew.

At first it was "medicine to make my belly work better".

Now at 11 and 10 they look up carb counts if I am too lazy to get up again. I was wearing my favorite TextingMyPancreas shirt that says "CGM" on it when I arrived at their house last week so they know all about that now too! :)

I have a two year old son and he is becoming very aware that mama needs medicine. He always runs to grab me my meter. Your post touched my heart, love your site!

Hi Lisa,

Thank you for your kind words. I was a bit hesitant to post here lest I be perceived as an interloper. (I hope not.)

It sounds as though your Three Musketeers were/are good for each other. At the risk of being trite, I think those sorts of close friendships, with or without diabetes, are "the gifts that keeps on giving." I suspect that N (and B) not only appreciated the love and support from J and your daughter, but also the sort of "chain yanking" and well-aimed, affectionate ribbing that only close friends can deliver with impunity (or at least some reasonable expectation of forgiveness). I'm guessing J and your daughter helped remind N and B that, first and foremost, they were regular kids -- just as mothers with diabetes are, first and foremost, Mom.

I'm sorry you've had some health challenges of your own, but it does sound as though you have some well-prepared teammates. I wish you good luck and good health.

And yes, I absolutely remember those old glass syringes of your grandmother's (and my mother's) era, their ritual morning boil, and the ubiquitous white-with-red-trim hospital tins full of alcohol-soaked cotton balls. Whenever I had a cut or scrape of my own, my mother wielded those (wicked) cotton balls with the no-nonsense authority of a seasoned school nurse!

Kerri,

Your blog is wonderful and has reminded me to think about diabetes through a 21st Century lens. I apologize for my possibly digressive historical anecdotes.

Thank you for such a great post. I'm currently in the last stages of my pregnancy as a type 1 diabetic and I've been wondering, how explain this thing called diabetes. Hopefully my brain isn't so mushed these days that I'll actually remember your approach when the time comes :)

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