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A parent walking in her child's shoes

Discussion in 'Celiac' started by Snowflake, Mar 2, 2015.

  1. Snowflake

    Snowflake Approved members

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  2. Christopher

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    I only made it to the first paragraph where she said she couldn't eat something and just closed it out.
     
  3. Snowflake

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    I'm not sure I understand? This mother is trying her best to approximate life with both T1 and Celiac Disease. At pretty much any public gathering where food is served, my daughter can't eat most of what's on offer. For example, we tried to feed her lunch at a the cafeteria at our local ski hill yesterday, and the only two GF options were potato chips and chocolate milk. So, yeah, if you live with both conditions, this basically happens anytime you try to eat outside of the house.
     
  4. caspi

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    She couldn't eat the pasta because she was going gluten free because of Celiac, not because of T1. :wink:
     
  5. susanlindstrom16

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    Thanks for sharing, I think its great that she did that for her daughter. The other day my daughter wanted to check my sugar and i was actually scared for a minute before she poked me. And then I thought, wow my 6 year old has been doing this without flinching for almost 3 years now. Definitely put things into perspective for me, and that was just one check!
     
  6. BrendaK

    BrendaK Neonatal Diabetes Registry

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    I have mixed feelings about that post. I have T1D and celiac. I was diagnosed with T1D after my son, and he does not have celiac. My thoughts after reading that were, wow, I wonder how the daughter felt when her mom got to "stop" being diabetic and gluten free. For me personally, I would have resented that. I understand what she was trying to do, but it's impossible to experiment with the emotional side of these diseases. Her experiment reminded me of the time in high school where I had to pretend I had a baby in child development class by carrying around a sack of flour 24/7 for a week. So I could see what it "felt like". Yes, the sack of flour got heavy. But no, it in no way felt like being a parent.
     
  7. caspi

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    I remember reading a post on FB awhile back about a mom that was wearing a CGM for a week alongside her child. I'm wondering now if this was the same person. I was horrified to see the photos she was posting of side by side readings after meals. It became almost a bragfest as she was posting photos with the different #'s. I couldn't help but wonder what her child thought.
     
  8. Snowflake

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    I haven't undertaken the same t1/celiac exercise as the mother in this link, but I have worn the Dexcom on a couple of occasions, albeit without a running photo stream online or any FB posts. I thought it was a useful exercise.

    First, it helped me appreciate what it's like to have a device constantly attached to your body 24/7. That was important for us parents to be able to grasp as we considered whether to add a pump when our 2 yr old was already wearing a cgm. Second, especially the first time I wore it a few months after dd's diagnosis, I think the contrast of my readings and hers was an excellent lesson for a diabetes newbie in how T1 works. Dd was too young to understand the significance of the numbers, but she did think it was cool that i had the same equipment as she did. As an added unexpected bonus, I actually learned something relevant to my own health, discovering that my bg runs pretty low (around 60) in the wee hours, which helped me address morning wooziness I'd been experiencing for some time.

    All in all, if it's done in the right spirit, and with an understanding that there's really no way for a parent to truly replicate the experience of having T1, I have to say, I think more data is a good thing.
     
  9. SarahKelly

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    Thank you for sharing this. Our whole family has gone gluten free with my son and I believe that because of that we are all very aware of how often we need to have other foods with us that are gluten free so that we don't feel like we're missing out. My husband also has t1d so I know this helps my son to know he always has somebody to relate to about it in our family. I do believe that a very important part of living well with a chronic medical condition is knowing you're not alone - I hope my son always has people around him that are supportive and allow him to know that even if they don't share the exact same thing as him he isn't alone in having to deal with something that is difficult.
     
  10. Ronin1966

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    An odd article, strange motivation, but, ok ... had her reasons been more personal, more intimate it would have been "noble", I suppose? As such, felt misguided to me at least.
     

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