THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Friday, February 24, 2012

I'm Not The Same.


She came home with an invitation to a cookie decorating party the other day.  No special reason...just a group of friends getting together to make some memories and have fun on a Friday afternoon.  She excitedly handed me the card as we were walking away from her gate, and then scurried ahead to join her pals before skipping off to the park.

I looked around at the other moms, who were also reading the invitation, and couldn't help but to wonder what they were thinking.  One by one, they smiled before tucking it away without a care in the world.

I saw that invite, and my mind immediately thought about gluten and carbs.  About how I'd need to make some gluten free cookie dough since my freezer stash was used up with the holidays.  I thought about shared decorating knives, and the tops of sprinkle bottles that would inevitably touch the glutenous cookies they were embellishing.  I wondered if I'd be able to gauge the pump setting changes I made this week.  After all, it's not every day, you get to smother a cookie with decorations and call it dinner.  Ugh.  I wondered if this party would wreak havoc on her blood sugars, and if I'd sleep for more than a 3 hour stretch on the night that followed.

I'm not the same.

Across the parking lot, up the little hill, and the park was there.  Perfect weather.  By the time I made it to the table where she left her backpack, they were already off and running.  I knew she needed to test her blood sugar, but I let it slide.  The other moms huddled, and we chatted. About sore throats and runny noses...a fever and antibiotics.  They were talking about plans for the weekend, while I stared past them, watching her play at the far end of the field.  She seemed off.  Slower, off balance perhaps?  From where I was sitting, trying to listen to the conversation, I couldn't tell if there was a problem.  I was distracted by the distance between us.  They looked around and glanced from side to side, making sure their kids were okay while I stared at every step, every move, every sign to determine if I should run her supplies out to the to the field.

I'm not the same.

I decided to walk a few laps around the field.  It would give me a chance to meet up with my girl on the other side, and test her number while passing by.  55.  I knew it.  The other kids started running back to the tables.  Snacks were waiting.  We sat on the sidewalk with juice. And Starbursts.  And Nerds.  I retested to see that she was coming up, and then we walked back together.  Everyone was scattered.  I watched as the other moms doled out granola bars and handfuls of goldfish without a care in the world about carbs or gluten.  She was feeling better, so we retested to see that she was over 100, calculated the carbs, and bolused to keep her from skyrocketing.

I'm not the same.

We opened the backpacks, and started going through the folders.  The other mothers were talking about their children's 100% scores, and I noticed that mine had missed 9 math problems.  Math certainly isn't her favorite subject, but nine is still a lot of errors for her.  Come to think of it, I had no idea how her numbers had been all day.  I wondered what part of the day this assignment was given.  I wondered what her blood sugar was at the time.  I reached for the remote to scroll through the history.  They reached for a cell phone to return a text.

I'm not the same.

Drama runs an extra half hour after school now.  The big show is getting close!  They talked about how nice it would be to have an extra 30 minutes for prepping dinner, and helping the other kids with homework.  I wondered if I should decrease her afternoon basals, just to be safe.

I'm not the same.

Before bed, I brushed her hair while she read to me.  Then we talked about school, and who she played with at recess.  We talked about who she sat with at lunch.  She showed me a silly handshake they made up on the playground.  And we talked about the cookie party.  She told me that she got nervous when her friend started passing out the invitations.  She was worried that she wouldn't get one.  When I asked her why, she replied...

"Because I'm not the same."


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45 comments:

  1. Seriously!!!! This is perhaps my favorite post ever written by you Wendy. So eloquently stated. Thank you for this...a GIFT of an explaination of our lives. Love to you and the fam.

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  2. Oh Wendy, this hit me right in my diabetic heart. Beautifully written post. Love and hugs to you guys....xoxo

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  3. WOW! loved it! Really resonates :)

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  4. UGH! STABBED ME IN THE HEART!! We try so hard to keep our kids the "same"....but in reality I know they feel different. BREAKS MY HEART, especially for our sweet kids that face Celiac as well. Her heart is golden, and I know she understands that while she/we are not physically the same sometimes we are still all the same in the end. Perfect, just the way we are.

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  5. Thank you for sharing your heart today. We had a tough day yesterday and this blessed me so today. Thank you for offering a window into the often unseen behind-the-scenes details of T1D. It was almost like I was able to exhale after 6 months since our dx, knowing we are not alone...even though I knew we weren't.

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  6. Good post. You're not the same as them but you are the same as me. Big hugs for you and Sugar.

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  7. Good post. You're not the same as them but you are the same as me. Big hugs for you and Sugar.

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  8. LOVE Amanda's comment! WE are the same :-)

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  9. Why ya wanna make me cry first thing in the morning???

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  10. This is a beautiful post, Wendy. Truly beautiful.

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  11. Reyna took the words right out of my mouth...what a GIFT you and your family are to all of us! You always seem to write what my heart is feeling and wants to say but the words just aren't there. Thank you for this gift today of making me feel the same with you.

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  12. What a great post! Just have her wait until FFL this year! We did a mini conference last year and it was a great experience for Brianna. I can't wait for her to be around so many kids just like her! She told me at the conference they went swimming and half way through all the d-kiddos had to get out and check and only like 2-3 kids stayed in the pool, she was so excited! She was in the majority not the minority!
    Can't wait for a week of her being around kids that are the same and get it :-)

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  13. Amen. Jamba juice is doing a fundraiser after school today...at the school. The boys have been excitedly talking about it all week.

    I'm not the same either.

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  14. brought tears to my eyes. Although my daughter was diagnosed at 17, and its only been 1.5 years, and she doesn't have celiacs....I can relate! It isn't the same, and it is so different to watch our children try to fit "in" when everything is different!! Thanks for sharing your thoughts!

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  15. This is hauntingly beautiful. You know how to open the tear ducts!

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  16. Beautiful...just beautiful. Heart wrenchingily beautiful. xoxoxo

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  17. Although my daughter is 29 & now married (and also dx'd with celiac 8 yrs ago), dx'd almost 20 yrs ago, this post took me back in time to so many comparable experience- running out in between softball innings to insure she'd eaten enough of her sandwich to "cover" the carbs in those awful NPH insulin days, forcing my eyes back in my head when I was explaining to a mom about my daughter's (self) care at a Bday party & having the ignorant mom blurt out" oh my g-d- she's not one of the ones invited to sleep over I hope!" (she wasn't) in front of my daughter...and so on & so on....Yes those incidents were painful, sometimes cruel, but they helped mold her into the compassionate, caring, resilient, resourceful, insightful, beautiful woman she is today....

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  18. ((hugs)) because I'm not the same either. You definitely know how to write one powerful, tear-jerker post! This is a must read! <3

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  19. WOW! Thank you so much for sharing your heart with us, Wendy. This post is one of my ALL-TIME FAVES!!! SO powerful and SO beautifully written. Thank you. <3

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  20. While I am not the same, I am once again reminded of how blessed I am to have found the rest of you who are not the same either!

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  21. You may not be the same, but it sounds as if you are both perfect just the way you are

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  22. I don't have a daughter with diabetes or celiac, but I have a daughter who I want to grow up knowing that the differences in people are what makes us all amazing. I'm glad there are people who are "not the same" so that she can see how people deal with the life they are given. Sugar is a wonderful example - and so are you!

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  23. I don't have a daughter with diabetes or celiac, but I have a daughter who I want to grow up knowing that the differences in people are what makes us all amazing. I'm glad there are people who are "not the same" so that she can see how people deal with the life they are given. Sugar is a wonderful example - and so are you!

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  24. I'm the same as you! Your post made me cry, because it's my life too. Thank you. :)

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  25. Thanks for sharing.....have not had a cry in awhile but this did it! One of Taylors friends in her 2nd grade class was DX 2 weeks ago. Taylor came home crying and I asked her why she was crying....the said " because now shes different too Mom". Broke my heart. But we all ( diabetic families) have eachother and we all share the "same" life and that is comforting to me!

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  26. I'm not the same either and I was amazed to know my diabetes is felt by my non type one daughter. My heart is filled with joy knowing you are making her the same. Every worry, every second watching her, being her pancreas and mom. Gold star today. This post is so wonderful. Thank you, now I am at least the same as her...

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  27. You're an amazing, wonderful mom with an equally amazing, wonderful daughter. I thought about this all day, especially at a lunch with friends where others enjoyed desserts but I declined. It's hard...

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  28. My son is 9, type-1 for three years and a Mom suggested to me that I start him on a gluten free diet so he won't develop celiac. I thought to myself, are you CRAZY? It's hard enough to handle the diabetes! The only people who have a clue are those dealing with it every day. Even the endocrine doctors don't really get it, I've had to switch off with my husband going to the doctor because I get so frustrated. Sometimes we just can't try any harder. Blessings to you and your family.

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  29. oh, Wendy. This just touched my heart right now. ((HUGS)) you guys are so special to me and I am thankful that you share this with us, I need this in my life to remind me that although I am not the same and neither is Isaac that we are not alone either.

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  30. Her words made me tear up. I feel for you. I cannot even begin to understand where you are coming from. My 8 year old has a friend with Cyliacs and we have known about her diagnosis since she received it. For birthday parties I usually go out of my way to make sure her mom won't have to stress about 'treats.' I know there aren't many mom's who have the time or even try to find out if its needed. Last year we did a 'cake' walk and so I made special treats for this little girl AND I also purchased an Ice Cream only cake from Baskin Robins with flavor approval ran past my daughter and her friends mom. (Luckily they all three agree on many things)

    I wish all people were conscious about these things.

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  31. Yep, it's not the same for us or our kids, and that makes little things, things that should be 'normal', a big deal.

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  32. This post totally yelled at me. My daughter is 7 and is struggling with playdates. not because she isn't social, but because of crappy diabetes and celiac. This is so us. The fish cracker thing really got to me because she said to me the other day "do you think I will ever be able to eat fish crackers again?" As much as I don't care for them it made me so sad. I am thankful for sites like these. It's nice to know we don't have to go this alone. Thank you!

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  33. Very well said. This just breaks my heart. I know that I'll be thinking about this for a long time.
    Thanks for putting these feelings out there for all.

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  34. I like to view it this way: people with diabetes (and celiac) may not be the same, but everyone at some point in their lives will have something to deal with, the question will be how well-prepared they are for it? People with any chronic disease bear a special burden and the day-to-day challenges of life with a chronic disease (or two!) should mean that other challenges will come easier. I always take a kind of Schadenfreude at people who fall apart with seemingly minor challenges life has thrown at them! Anyway, thanks for a thought-provoking post!

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  35. What a beautiful post, Wendy, thanks for sharing. You hit the nail on the head - our d kids are not the same as other kids, and we are not the same as non-d moms. But in the diabetes community we ARE the same, and I think that's what makes the DOC so special.

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  36. How profoundly true... brought tears to my eyes... as a mother of 2 kids with D and my daughter has celiac too. it certainly adds yet another challenge.....and I still argue that GF flours/foods make her blood sugars spike hours later....anybody else agree???

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  37. I could have written every word to this post. Dealing with celiac and type 1 diabetes is so hard, our kids are definitely not the same, but you know what? they are stronger because of it. They deal with so much, things that other kids AND parents/adults take for granted. Hopefully they'll be a cure for BOTH type 1 diabetes AND celiac disease in the near future.

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  38. Thank you for this - I gasped at how closely I can relate. Just yesterday my T1 daughter was crying just thinking about the change to middle school next year and said, "I'm just... different." Ugghh... the ongoing grief/pain of being a T1... & her mom! It is comforting to hear others feel, think, & experience these things too.

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  39. A link on DiabetesMine brought me here, and boy am I glad it did. You're a great mom (and a great writer!), and you should be so proud of your daughter that she "gets it" and complies with it, even if she doesn't like it.

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  40. Oh Wendy, I love this and hate this at the same time. No, we aren't the same. We are stronger and we are fighters . . . all of us. But sometimes it's so hard and sometimes I do wish we were all the same.

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  41. Sigh...You made this 45 year-old father of a beautiful 6 year old PWD girl sniffle.

    Diabetes sucks.

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.