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A Mother’s Reflections of Raising a Child with Celiac Disease

May 27th, 2009 by Valerie Chavez

Celiac.com, By Amy Leger

Yes, it would have been more appropriate to celebrate Mother’s Day with

this post, but ironically (or is it coincidentally) the job of being a

mom has really prevented me from preparing this post before now.


On

this Mother’s Day, I found myself thinking back to all those times

during Emma’s illness, subsequent celiac diagnosis and eventual

permanent lifestyle change where the Mom really came out in me, both

quietly and ferociously.


Here’s my list starting with before diagnosis and goes chronologically from there - maybe you can relate:

I remember...

1. Before diagnosis, wondering why my daughter, celebrating her first birthday, refused to eat cake and threw a tantrum.
2. Looking
   
   at my 1-year-old daughter with skinny legs, bloated tummy, and crabby
   
   disposition and wondering - is this the way the next 17 years will be.
3. Questioning
   
   doctors about why my daughter throws up so much and has such a big
   
   belly - I was treated like I was an overprotective mom who knew nothing.
4. Cleaning up vomit on the carpet, on clothes, in the kitchen, in bed, on the wall, on stuffed animals, etc.
5. Leaving work early and in tears because something was wrong with my daughter and no one knew what it was.
6. Feeling
   
   the best relief ever when a gastroenterologist confirmed our doctor’s
   
   eventual diagnosis of celiac disase - just by looking at her.
   
   Solidifying the fact that we weren’t crazy!
7. Getting up at 4:30
   
   a.m. to fix 16-month-old Emma breakfast at the latest acceptable moment
   
   because she couldn’t eat for 8 hours before her endoscopy and biopsy.
8. My eyes welling up in tears as the anesthesiologist put the mask on my daughter to put her “under” for the biopsy. She was fighting and crying and then her whole body went limp.
9. Panicking
   
   at our local grocery store, as I looked for gluten-free food for the
   
   first time. I only came home with eggs, Cheetos and Corn Pops (which
   
   now are no longer gluten-free).
10. Being so happy that my husband
    
    had gotten me a bread maker for Christmas the year before; a gift my
    
    male co-workers thought was so dumb, ended up being such a blessing so
    
    I could make gluten-free bread.
11. Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
12. Being
    
    frustrated because I had to convince many friends and family that
    
    celiac is a lifetime disease and her diet had to be taken seriously.
13. Grieving the loss of “normalcy”.
14. Being
    
    relieved after finding other parents who had recently started a celiac
    
    support group. We all came together and eventually started planning our
    
    annual fundraiser: Making Tracks for Celiacs.

Fast forward to 4 years later….

1. Being nervous about sending Emma to Kindergarten, but pleased we found one hot lunch she could take: Tacos!
2. Celebrating victory when she ate tacos for the first time at school and they were “awesome!”
3. Feeling bad when I had to tell her that tacos were no longer available on the menu.
4. Making 3+ years of daily cold lunches for school.
5. Feeling victorious when our school found gluten-free food options for Emma, which led to a gluten-free menu!
6. Feeling
   
   strong enough as a mom of a celiac child, that we took in Ida, an
   
   exchange student with celiac; I started this blog; and I am teaching an
   
   occasional gluten-free class.

If you’re reading this as a

mom of a child newly diagnosed with celiac, you may be able to relate

to just a few things in this post — but that will likely change. As

time goes on, the overwhelming shock of the diagnosis and diet will

subside. With education and support you will feel stronger, more

confident and ready to not only ensure your son or daughter is getting

the right foods, but that you’re empowering them with the same tools to

manage this gluten-free lifestyle on their own.

Now that’s a great mom! Happy Mother’s Day!


LINK: http://www.celiac.com/blogs/138/A-Mothers-Reflections-of-Raising-a-Child-with-Celiac-Disease.html