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“Do you wish you didn’t have diabetes?”

“Hang on two more seconds, kiddo.  I need to check my blood sugar before we go.”

She watches me casually as she slides her arm through the sleeve of her sweatshirt.

“Mom, do you wish you didn’t have diabetes?”

She asks me this question all the time now.  While diabetes is not a secret in our house, it’s not a hot topic of conversation.  Instead, she sees what my pump looks like and knows what my Dexcom does, and she likes to push the button on my lancing device to deploy the needle when I need to check.  She knows that glucose tabs are for low blood sugars and that I apologize for being unreasonably grouchy when my blood sugar is frustratingly high.  A few times she’s seen me cry because I was low, but I try to explain to her that it feels bad in the moment but then I feel okay.  Most of this becomes threads in the fabric, but lately, she’s been asking me that one, specific question on repeat.

“Mom, do you wish you didn’t have diabetes?”

My answer is generally the same every time, because I don’t want to lie to her.  I am not filled with diabetes-loathing, and even though this disease is the single biggest negative issue I deal with every day, I don’t feel entirely devoured by it.  But I don’t fucking like this disease.  It’s a complicated half-way.  There are moments that are compromised, but my life as a whole is not.

“I don’t like having diabetes, but I’m fine.  I like having you.  And having Daddy.  And having Looper and Siah Sausage,” and then I deflect to something else because I don’t want to have long, drawn out discussions with my introspective daughter who has already queried me about how many birthdays people have left.

I think about how diabetes is something normal to her, and always has been.  Moms wear insulin pumps, and it furrowed her brow for years that my friends here at home don’t have a pump clipped to their hip.  Moms carry purses filled with crayons and hand wipes for kids, and then a jar of glucose tabs for when the car is hard to find in the parking lot.  Mom’s bike basket has a bottle of water and a Dexcom receiver in it.  Moms sometimes say, “Let me check my blood sugar first,” before going outside to play.  This is her normal, too.

“Mom, are you glad I don’t have diabetes?”

“I am glad you are exactly who you are.  If you ever get diabetes, we’ll handle it.  When it comes to cookies, we’re the toughest,” and I breathe out as slowly, slowly, slowly as I can.

36 Comments Post a comment
  1. Kim #

    I love your responses. <3

    10/3/14; 10:52 am
  2. I’m always amazed and saddened about how much my 3.5 year old knows about my diabetes. Whenever I pack snacks for a trip to the park she says, “Mommy, don’t forget to bring 1 juice box for me, and 1 for your sugars.” And then, there was that one day where I swear she went to pee 8,000 times. I asked her if I could check her blood sugar and snuck it in fast before she could really realize what I was doing (she totally did not cry, because she’s a tough cookie, too) – and she was fine. But it freaks me out, all the time.

    10/3/14; 10:57 am
  3. Tracy #

    That was a great post. Thank you!

    10/3/14; 11:12 am
  4. <3

    10/3/14; 11:39 am
  5. Sometimes it’s easy to forget how much our diabetes affects the ones closest to us. It’s not easy to forget how much we don’t want it to affect them. Thanks.

    10/3/14; 11:43 am
  6. ria #

    ditto what Steve says and, Birdy’s haircolor is BEautiful !

    10/3/14; 12:06 pm
  7. It’s a tough thing to realize how much our health problems are picked up by our children. But my chronic illness has made my son a more empathetic person. He’s very sympathetic w other people’s chronic issues. I’d change my being sick all of his life in a minute but I’m very happy with the decent man he has become.

    10/3/14; 12:08 pm
    • Tim Steinert #

      In the end, that’s all that really matters. You gave him an understanding that people sometimes struggle with their health and that to be kind and helpful is good and honorable.

      10/3/14; 12:35 pm
  8. amazing. Great conversation with Birdie, thanks for sharing!

    10/3/14; 12:30 pm
  9. Ah the curious one. Once they start speaking up, you realize how much they pick up by sheer observation and how they really think about things they see, not just watch. And it’s such a huge revelation to kids when they realize that every other family isn’t like their own.

    A memory I have about Brendon was when he was around 3 or so and Jacob, an infant at the time, was sitting in his high chair. Brendon got real close to his face, Jacob was all drooly and smiley, and Brendon said to him in that sweet kind of voice people use with babies, “Jacob, when you’re my age, you’ll have diabetes just like your big bruver.” And then he rubbed noses with him and Jacob continued being drooly and smiley. He just expected that if he had it, then then Jacob would have it too. They’re brothers and they’re both boys, so it’s logical, right? He never thought Jess would get it because she’s a girl. I thought it was sweet that he thought his little brother would grow up to be like him, but then I was saddened too. Dammit, kids, tugging at my heart strings like that.

    10/3/14; 12:39 pm
  10. Roxanne #

    Beautifully put. After 32 years with this disease, I can’t say that I don’t hate it, because I do truly hate it. But . . . I have adapted. My daughter just turned 3 years old and she asks me “Mommy are you OK?” when my pump alarms or my Dexcom beeps. She knows that when I’m low I need a Pepsi (it works for ME so please no lectures) and I have asked her ‘Can we just sit here for a few minutes while mommy gets better?” and she has never fought me on it. It’s just a part of our lives.

    10/3/14; 12:52 pm
  11. Beth #

    A few weekends ago, I was at a sports tournament with my nephews (college age), and one teammate saw my pump and shared that he has diabetes too. He came out of the game with a low, and I gave him some snacks to help. After he went to test, he came back walking like he was drunk and couldn’t hold his own body up, and reported that he had been 32 (and thankfully had gatorade and food in him already!). It was scary – and I had only just met him. I texted my husband, telling him how sorry I was that he had to deal with it. I had never really seen it from the other side before. And then my husband and mom were commiserating about how grouchy & argumentative I get when my blood sugar is low. I think that is the part that sucks the most – that stupid diabetes affects how I act towards my family & friends.

    10/3/14; 1:13 pm
    • I thought you were going to say the part that sucks is how my family gangs up and talks about me! 🙂

      Great job Kerri! Have to love curious and inquisitive kids.

      10/3/14; 7:33 pm
  12. This is a great post, Kerri. Most all or yours are, but this one …
    What an amazing little girl learning so much about life from an amazing mom.
    Thanks for sharing.

    10/3/14; 1:28 pm
  13. karend1 #

    Great post as always Kerri. My one niece always seems genuinely concerned, and that is huge from her as she it a toughie. Sometimes I start to eat and she says did you take your medicine, and other times I will be eating for a low and she states Auntie Karen you did not take your medicine. Little ones are sooooo smart.

    10/3/14; 5:47 pm
  14. Emma Tarabanovic #

    My first reaction to this post was “Hell Yes!” but then I started thinking about it a little more and I realized that yes it would be nice to not have diabetes, but being diagnosed at the age of 7 has helped to shape me into the girl I am today. As a 15-years-old, I am a little more responsible for my health than all of my friends. I also realized that being diagnosed with diabetes has made me emotionally stronger and has led me to understand that life does not end when something like this happens. Your life as you knew it may have ended…but really your life is just beginning.

    10/3/14; 7:18 pm
  15. Sharon #

    Hi Kerri,
    I was so worried about my daughter getting diabetes I enrolled her in the Trial Net study. Once a year she very cooperatively gets her blood drawn (2 x this year because the lab LOST it!!) and when I get the letter saying there are no markers for diabetes I say a little prayer of thanks. She’s 16 now—I got it when I was 23 so I’m probably going to worry my whole life—–Research—–Find a cure!!!!!

    10/3/14; 8:09 pm
  16. Laurie Farrell #

    Thank you for all of your posts!! ~ I appreciate this one a lot. We are approaching our soon to be 7 yo’s first diaversary—Recently, I was trying to empathize while we were doing a BS check that was not going well as I had a couple bad strips requiring me to stick her again. I said something like “Stupid diabetes!” in an effort to avoid swearing. . And, my six year old said. “I don’t know, diabetes is kind of interesting.” I said, “Wow. I’m glad you are more generous in your feelings about it. Cool, honey”. End of subject. If that is where she is at this moment, then who am I to try to tell her otherwise?. We’ll ride the “interesting” wave as long as possible. Bless your dear daughter~

    10/3/14; 8:45 pm
  17. Such a great way to put it, regarding the half-way point..

    It is a crazy kind of normal at best….

    10/3/14; 9:40 pm
  18. Thanks Kerri. I really liked this post. Birdie is an amazing kid and I know you were already aware of that. My daughter grew up to be a very compassionate adult. She experienced my struggles with roller coaster blood sugars, but I don’t ever remember her asking me a question like the one Birdie asked you. Thanks for sharing the conversation.

    10/3/14; 10:55 pm
  19. I love you responses. My daughter ask me this question nearly daily as well. I don’t lie to her either but I tell her diabetes makes up who I am as well. I’ve had it since I was a kid and without it I might not be the same person. If I am in any way grumpy she says “Mom you should probably check your sugar” She is such a sweet soul she even told me she’d take it for me if she could. But of course I’m glad she doesn’t have it. If she ever does get it, like you said we will deal with it.

    I love your blog! =)

    10/5/14; 12:52 pm
  20. My 14-yr-old son was just diagnosed 2 weeks ago with the same dreaded Type 1 DM I have battled for 32 years. I hate that we share this and pray that he is the only of my 4 kids that has to live with this but we both feel there are sooo many worse things you could be dealt in life.

    10/5/14; 11:11 pm
  21. Sarah #

    As usual, your post resonates so with my disease-hating/disease-accepting heart. I do not have diabetes but my daughter does. She’s four now. We are fine. We are thriving. We are awesome. But I too fucking hate this disease sometimes. I’m tired of making my baby bleed. I do not love stopping her fun for lows. It both breaks my heart and makes it soar to see her answering kids’ questions about her pump and Dex at the park. I don’t want her to see how much I hate this disease because it’s a part of her, and I love her and I want her to love her too. So when she asks me if I hate diabetes or if people can die from diabetes or why she has diabetes, I answer as positive as I can and breathe slowly, slowly, slowly also. ❤

    10/6/14; 11:27 am
  22. Martha #

    This is a great post. I think as my kids get older (14 and 16) every aspect of talking about diabetes gets more complicated. In a way, they’ve never been engaged enough with it, to be honest, although I talk about it a lot. And then when I specifically work to get them to be more empathetic about it by discussing the challenges with them, I then turn around and worry that if they ever get diabetes themselves they will remember TOO much about all the things I said about how hard this stupid disease is and feel overwhelmed by it. And then, other times, I can tell they’ve gotten themselves on the internet and done some googling about it, and they come to me with some hard questions about my life expectancy and of course I don’t know what to say about that, other than I do my best and diabetics live a lot longer than they used to. One good thing about older kids is that they don’t have so many immediate needs to meet when your blood sugar is tanking and you need to be left alone to recover.

    10/6/14; 1:59 pm
  23. Kerri,

    This is such a great post. Thank you again for laying it out, just the way it is.

    10/6/14; 2:32 pm
  24. elsiroomom #

    Well – I wish you didn’t have diabetes. I wish no one had diabetes. BUT – I surely do appreciate your blogging. Thanks Kerri!

    10/6/14; 5:31 pm
  25. My daughter, who is 4 and has diabetes, yesterday said, ‘I wish I didn’t have diabetes. I wish I were like my sister.’ This moment broke my heart. She has just started Kindergarten and there has been much more discussion and change (and stress for me!) with regards to her care, so I think she has noticed to say the least. Normally we minimize diabetes talk, and just do what we need to, and live life.

    It really is a complicated half-way.

    The next day I tried to talk to her about what she said, and I said, ‘Remember when you said…?’ And she had totally forgotten about it. Life was back to normal for her. What I did say to her is that diabetes will make her a better doctor one day, because she will understand how other people are feeling and will be better at helping them (she tells us all the time she wants to be a doctor).

    What’s funny is, when she was a little bit younger, she thought everyone had diabetes just like her.

    It’s about perspective sometimes.

    Thanks for your post.

    10/6/14; 7:15 pm
  26. Diabetes truly is something the whole family suffers from. My 10yo daughter sometimes gets overwhelmed with her diabetes. One night I spent a while consoling her as she sobbed asking why she had to have it. After she left for bed her little brother walked in the room, sat beside me, and stated matter of factly that he hoped he got diabetes someday. When I asked why on earth he would want that, he answered “So Shealyn won’t be alone.”

    10/6/14; 7:43 pm
  27. It’s always hard to know how — and how much — to say to our kids. Sometimes I feel bad about deflecting the issue even though I want to be open and honest about it. There’s always the thought in the back of my mind that my son could get diabetes too, so I’d better not speak too negatively of it or it might linger in his mind later on. You answered this quite well… nice job.

    10/6/14; 8:37 pm
  28. Alexa #

    Your daughter is so precious, and she’s very lucky to have a mom like you, who doesn’t shy away from the scary things in life.

    10/7/14; 4:56 pm
  29. beautiful <3

    01/8/15; 4:22 pm
  30. Kristen Mercer #

    Although I don’t like diabetes, I am thankful I have some level of control over this disease….unlike so many other disease that I could have. Both my husband and I are type 1, and our kids see nothing different about it. Only when my son wants a juice box, he might say it’s because he is having a low blood sugar….something he has heard his mom or dad say more than once. It was only after my daughter tested positive for antibodies in TrialNet that I had to try and explain what diabetes was. Although I am ok that I have diabetes, I am not ok with the fact that she one day will have it too. I pray everyday that my kids will live another day not having to worry about there blood sugar.

    Thank you for writing this post. It is definitely something I could relate to.

    11/13/15; 10:45 am

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