Thursday, October 16, 2008

You know...sometimes my heart just breaks...

I was reading a friends blog and her daughter (about the same age as mine) was eating a huge cupcake from a bakery. It made me sad for Maddie, who will never be able to eat a cupcake from a bakery, or a donut from Krispie Kreme, or a regular birthday cake from Safeway. Of course none of these things are healthy but to never even be able to have that treat, it just made me sad for her.

For those wondering, Maddie has a severe gluten intolerance or Celiac disease. We had her tested in May and found out that she also had a severe malapsorption issue, which is why her little self only weighed in at 21 pounds. Since taking her off gluten in May, she has gained a whopping 3 pounds, which in toddler pounds is a LOT. She's still very petite at 24 pounds and 32 inches she's about the size of an 18 month old but otherwise you'd never know she's different. She's so smart and talks like she's 13. Oh heavens we are going to have a blast with her as a teenager.

At church we've had to bring her gluten free bread for sacrament. Nursery presented a challenge but the leaders have been wonderful. They HAVE to wipe her hands before she eats. I bring her a special snack. Every once in awhile she gets glutened and it's very obvious but for the most part they do an awesome job.

As a mother you don't want your child to suffer. From the time Maddie was VERY young I knew something wasn't "right". I felt very proud of myself when I finally decided to do the testing (we went through an independant lab because the doctor's didn't believe there was any problem).
I'm glad we have answers. It's not easy (a lot of the time it's a huge pain in the rear) but it's worth it.
But it makes me sad. I'm scared to send her to school. People don't understand "gluten sensitive" like they understand "peanut allergy". She won't be able to have birthday cake when it's another child's birthday. Even some ice creams have gluten. She can't trade food with other kids because it could be cross contaminated. I try not to think of the "stuff" she'll miss out on because it really breaks my heart. All of it is food related, which is silly but our society is very focused on food. You don't realize it until it's taken away. No pizza parties, no sub sandwiches, no flour tortillas.

But I'm so grateful it's not anything worse. Her "problem" is taken care of simply with diet. That's it. No medication, no special exercises, nothing. Just diet. And it's so worth it to see your child respond the way she has. The difference is astounding.

She's an amazing little bug. She's sleeping on the couch behind me (we have sleeping problems with her, but that's not related) and giggling in her sleep. I tell you what, there is NOTHING cuter than that. And I'm so grateful for her.


Jill said...

I know a grown woman with that same food allergy & she is such a great person who has learned to be happy eating the things she can. I can't imagine, though. Your little angel seems like a happy little trooper and I'm sure she going to grow up not skipping a beat. :) And my little Parker (who is almost 3) only weighs in at 24 pounds as well. I love little petite things...I don't have to spend as much on clothing b/c they never grow out of the old ones. :) I am LOVING the sling. Paisley loves it too, I have to put her in face-out sometimes so she can see, we wouldn't want to miss something. :)


I have never heard of that! I am sorry about it. So glad you guys found out about it early.

Matt & Sarah Pace said...

I'v never heard of that!
But good thing she doesn't have to take any medication or shots or any of that bad stuff!

Ensman's said...

Hey Shanee! I just found your blog from Christine's! You have such a cute family and I am glad to hear you guys got her food allergies all figured out!