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I Don't Know

Tuesday, January 17, 2012

I don't know...

That's the answer Sweets gives when someone asks her about her diabetes or what she's doing when she's testing or what the stuff is attached to her body.

"I don't know."  Then she looks away and makes it clear that the conversation is over.

She doesn't do this at school.  She doesn't do this with friends.  Not with people who "know".  And as you've seen through some of our videos, she has no trouble talking about it. 

Maybe it's because they already know and are comfortable with it.  Maybe it's because we read the Coco book to her class and explained it all to them. 

But when it comes to an "outsider" - she just does not want to talk about it. 

It happens at gymnastics a lot.  She wears a little leotard that is impossible to hide anything under.  We found one with a black bottom so you don't really notice her pod unless you LOOK for it.  (Which, by the way, has made us all love the Omnipod ever more!  The ability to "hide" it has been a big deal - a lot more so than we ever expected when we first switched.)  And we don't make her wear the Dex receiver.  But we've put the sensor on her arm for the winter when it's hidden under long sleeves.  Works great - except for gymnastics.  And the other girls ask what it is. 

It happened this weekend at cheerleading.  I was testing her blood sugar during their half time snack.  The little girl sitting next to her asked her what she was doing.

"I don't know" was her response.

I whispered to her that she didn't need to be embarrassed.  That it was ok to tell her what it is and explain it. 

"I don't want to.  You do it."  she said.

Which is fine...  I don't want to force her into talking about diabetes if she doesn't want to.  But I also don't want her to be ashamed or embarrassed. 

So I don't know either.  I just don't know what to do about it.

For now, I just haven't made it into a big deal.  Or a deal at all, really.  I just keep telling her she doesn't need to be ashamed or feel embarrassed.  I tell her that the kids just want to know because they've never seen it before.  They are just curious.

I think she gets that.  I think she just doesn't want to talk about it to other people. 

It's like she feels really comfortable talking about diabetes to the diabetes community.  But it's just too much to tell everyone else.  People who don't get it and don't understand. 

I understand.  I feel that way sometimes, too.

I'm sure this is a normal part of growing up with diabetes. 

It's just that as a parent, I feel so responsible for her well being.  I feel so incredibly responsible for her health.  And I feel so incredibly responsible for making sure she is a well adjusted kid who grows into a well adjusted adult who is capable of dealing with everything that diabetes throws at her - both physically and emotionally. 

The thing is... I can tell her until I'm blue in the face that it's ok to be open about her diabetes.  I can tell her how awesome she is and how brave and how cool it is that she can test herself and take care of herself.  I can tell that she's amazing and that it doesn't matter what anyone thinks about her or her diabetes.

But even at age 5, she knows that I'm Mom.  And that's my job.  And that it's just different with other people.  And that I don't get it because I've never been 5 and had type 1. 

Which is why I think it's so fantastic that Kim from Texting My Pancreas made THIS VIDEO.

Go on... click over and watch it.  I'll wait.....

See?  Super cool.

I don't know what to do for Sweets.  I don't know what else there is to do... 

But I know that she needs other people with type 1 in her life.  People of all ages.  All genders.  People who really do get it. 

She watched this video with me.  She loved that Kim has diabetes - just like her.  And she listened. 

Is she going to go out and explain to everyone she meets about diabetes?  No, probably not.

But she still needs to hear it.  She needs to hear that it's ok to have diabetes.  And she needs to hear it from someone other than me.

So to Kim and all the other adult T1 bloggers out there...  THANK YOU.

I've said it before and I'll say it again.  You provide for her what I can't.  You get it.  You can guide her through life in ways that I can't.  Please keep blogging and vlogging and doing your thing.  You have no idea how important it is to this next generation of T1's.  And you have no idea what it means to me!

The things I don't know about diabetes and raising a child with diabetes could go on until eternity.

But this I DO know...  The DOC is amazing.  The support is incredible.  And I'm so lucky to have all of you to walk this road beside me.  Because of you, Sweets will be healthier both physically and mentally.

What a wonderful gift!



  1. As far as I can tell, you are doing exactly what you need to be doing. Keep being supportive and encouraging, while letting her set the pace - it will mean so much to her.

    I am so glad that Sweets has us grown-ups with T1 - and we're glad we have her, too. :) Much love to you all!

  2. all i can say is that i think you are both doing a great job! i wish i had had the resources that are out there now, when i was dx 37yrs ago! keep doing what you're doing, and know she will never forget! (((hugs))) to all of you!

  3. It is so interesting how 5 year olds handle this. :) Adam has this weird "tic" (that's what I call it!) that whenever he meets someone new who is an adult, he IMMEDIATELY blurts out, "I have diabetes." Then doesn't say another word. It happened last week when I was at the mall with the kids and ran into an old high school friend. I often wonder about the psychology of the reasons he does that! With kids at school, when they ask about Dex, he'll often just mumble, "it's nothing...."

  4. You are doing everything right. I'm 33 and I sometimes also just want to say, "I don't know." In fact, I do the adult version of that - quick short answer and change the subject. I can't help it. For a long time it was embarrassment, but now it's more about just not wanting to talk about it. Living with this condition requires you to think "DIABETES" 24/7. When I don't have to think about it, I just don't want to. But what you're doing is important, because you're reinforcing that there is no shame in having type 1 diabetes. Perhaps as she gets older she will be more willing to educate others. Perhaps not. At the end of the day, it's her body and her disease and you should just let her take the lead in what she wants to tell other people.

  5. Sometimes when people ask Kortnie what she's doing she says "nothing", or I've heard her tell kids that her pump is her cell phone. LOL...but then other times she tells all about her T1 and her pump. So I guess it just depends on if they are feeling like talking about it or not.

  6. You are doing great keep doing what you are doing! Let her go at her own pace, encourage her, remind her that she is so brave and strong, and most of all just remind her diabetes and all you love her to pieces. I can remember when I was younger I would ask my mom whether random strangers knew I had diabetes like I had it stamped across my forehead. Every little T1 will come into their own when it comes to their diabetes and it is incredibly difficult because we realize how different we are. The one thing that helped me was diabetic camp. While there I was not different and I didn't have to explain to everyone about it.

  7. Ally used to be just like that. She would always make me tell people about it when they asked. She still does sometimes, but mostly she answers them in her own words now. It's kind of cute.

    I have no doubt that one day Sweets will be educating and advocating just like her momma!!

  8. I just read about your wonderful family in the Neighbors section of DDN. You have a beautiful daughter! While I am blessed with three healthy children, diabetes is a disease I've seen wreak havoc with the lives of other family members and friends. I am looking forward to following your story and hope to get ideas on how I can help. Thanks for everything you do!

    P.S. I love the crafting ideas you've shown in your last post. Gave me GREAT ideas for next year!!!!

    1. WOW! Thanks for stopping by! Diabetes definitely affects families... and every single part of life. I love that you want to help! The best thing you can do is be educated about the differences between type 1 (like Sweets has) and type 2 - and then get involved! We have a wonderful JDRF chapter here! We have events often and the Dayton Walk to Cure will be in September! You can do the Ride to Cure - we have a wonderful training program and group here. You can sign up to be an advocate (follow this link... And you can always email me for more information! Thanks again!

  9. I just read about your wonderful family in the DDN. You have a very beautiful and brave little girl! While I am blessed with three healthy children, I have seen the disease wreak havoc in the lives of other friends and family members. I look forward to following your story and finding ways that I can help. Thanks for sharing!

    P.S. I love the craft ideas in your last post. You've given me great gift ideas for next year!!!

  10. I agree I think you're doing an amazing job, and it will be on her own time. I agree to grateful for the amazing PWDs in our life!


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