Monday, October 01, 2007

Little Debbie


About exactly 6 years ago, I was to run my very first 1/2 marathon. I was living in Santa Barbara, and life was good.

Except for the occasional stomach upset. No details (you're welcome), but I'll tell you that it wasn't terrible, but it wasn't bliss either.

Nonetheless, I was enjoying life on the beach, being in the best shape of my life, having 2 adorable children ages 3 and 2, and was getting ready for a real 13.1 mile challenge.

The FamPractioner suggested during a routine yearly that I had irritable bowel. But to be safe, sent me to a GI doc. No prob. I went, did all that was required of me, and went home. I went back for a followup and everything looked normal, but why didn't I have my blood drawn like he'd asked me to? Oh yeah, I thought, I forgot. Come on, who has time to take 2 very small children to the lab and wait to have blood taken? I mean, the beach was calling! Okay, I'll do that today I said, and he'd call with the results, and I probably wouldn't see him ever again.

About 5 days later he calls me, on my birthday, as we're leaving with friends to celebrate. Something about an endoscopy. Huh? A biopsy. Celiac disease. Umm, what? His office would call on Monday to set it up for next week. I press end and cry in the car. I didn't want to go out, I wanted to sit on my computer and research selliak, or was it sillyak? I didn't even know how to spell it, much less what it meant.

The appointment was set for a Friday. The next Friday. The Friday before my race. No prob, I thought. It was an outpatient procedure. Something about looking inside my stomach. I knew I probably should put it off until after the race, but I couldn't wait. I needed to know.

My dearest was in grad school full time. Which meant, 8am to 5pm, home for dinner, and then back to the lab from 8pm to 11pm, Monday through Saturday. Sunday he only had to go in from 8pm to midnight. So he didn't have a whole lot of free time. But that Friday he did take off to drive me to the hospital. I remember not wanting to inconvenience any of my friends with my children, so he dropped me off, took the kids to the park and was to come back in a few hours when I called.

I remember being semiconscious during the procedure. I remember having to swallow the camera that was attached to a very long cable. I remember feeling like I was gagging. And I remember looking at the tv monitor, seeing the inside of my throat, stomach, small intestines.

I was wheeled back into a recovery room. The doc came in, said it was confirmed Celiac, gave me some pics to take home, told me to see a nutritionist about a special diet, and left. I was still groggy and not fully coherent, but I remember him telling me how lucky I was that it was something so easily remedied, I just had to be gluten free for the rest of my life. Great, I thought. What's gluten?

The nurse asked who was taking me home. I needed to call my husband's cell. I walked downstairs to the entrance, got in our little Acura, and slept the rest of the way home. I crashed on my bed for the next 12 hours. I tried talking to all the people calling me on the phone, but I'm not exactly sure what I said. I was out for the rest of the night.

The next morning I woke up and ran a half marathon, my first. I was still a little groggy. And a little fatigued. But I remember thinking that at least I knew for sure that there was something wrong and that I could fix it. I struggled with the first few miles, but towards the end I felt strong. I remember passing people near the finish line, and I loved it. Hey, if I can run 13.1 miles, I can certainly conquer celiac disease, which I had finally learned how to spell.

*******

My then 2 year old is now 8. She's going in for her own endoscopy in 2 days. It's to confirm what we already know. Celiac disease for her too. Hopefully nothing more. I recalled the fear I'd had when I went through it, all the unknown, and I'm so grateful I have my experience to relate to. I'm not nearly as frightened as I know I might be.

But I am sad for her. Sad that she's that girl now. You know, that girl who can't eat anything at birthday parties, the topic of conversation any time anyone brings out a plate of cookies and she declines. Sad that she'll never get to experience so many wonderful foods that 8 years hasn't afforded her. Sad that she'll never get another Krispy Kreme hot from the fryer. I feel like I'm taking away just a smidge of her childhood when I take away the class party treats in all their glory. Now I know some of you out there are going to cry out, "but she'll feel so much better now!", which I know. Trust me, I know. And I know that I can bring in class treats. And I know I can make homemade everything. But I've lived this life for 6 years now. And while I feel so blessed to be able to control my health in a way I wasn't able to prediagnosis, I still know how hard it is. And so I am sad.

********

Today I went to the store for groceries. I had to get food for school lunches. I stood in the packaged cookie aisle, mulling over the ones on sale, and realized that this would be the last time she would ever eat any of these items again. Suddenly realizing that we only have 2 days left for her to try every gluten item in the store, I pushed my cart to the Hostess snack cake aisle and picked up a package of Little Debbie frosted brownies that she's been begging me to get. Because I know that it'll be the last time she'll get to have them.

And I am trying to not be sad.


5 comments:

Anonymous said...

I'm so sad for her, but you totally rock as a mom letting her have her "last meal" so to speak of gluten. Hopefully she will appreciate that someday!

Melony said...

We called it the Last Supper. I hope that's not blasphemeous.

Melanie said...

Ok, I so understand this. My daughter is 17. It's really hard watching her go through this sometimes. Just today she wanted me to buy her a bean dip they sold at Sam's club. A gal she works with brings it into where she works. She thought she had read the label carefully and it was wheat free. But when I went to buy it, it was not wheat free. My heart just broke because she had tried it and was so excited because she thought it was something she could finally say yes to. She has to turn down so much. So she and I will make homemade bean dip this weekend.

She has had to memorize what she can have a what fast food place. Which snacks are gluten free and put up with the peer pressure when friends think it's silly she can't just have a bite. I know she will get through this and she will not have years of suffering as I did, and I am so glad for that. But, I still feel just like you do and understand where you are coming from.

Chuckiii said...

Just now discovered your blog while looking for GF recipes and came across this post. My Alice was diagnosed at age 2 (the only one in the family). She had her 8th birthday last Friday with a big sleep over (first group one). One of the kids told us it was the best birthday cake she'd ever had. My wife made it from a Pamela's mix, I think.

I have the same pain you expressed so well. Alice copes better than I do I think. She rarely complains, but sometimes I can see it in her eyes, not often though. Having Celiac is just a part of who she is. Like being smart or having straight hair.

At another kid's birthday party, where we brought Alice her own pizza, a kid asked why she had a different kind of pizza. One of Alice's best friends said, "Oh Alice gets to eat all kinds of special gluten free stuff, she's so lucky." I had to leave the room. That little girl is now my favorite of Alice's friends.

I guess my point to this long ramble is we probably feel the sadness and pain more than they do. The other thing is don't apologize for your empathizing and feeling your child's pain. It's what makes you a Mom. It's what helps make it okay for them.

Rachel M said...

So I JUST stumbled on to your blog & you are HILARIOUS!

I thought I would comment on this post just because I'm "that girl" too - but don't fret, it isn't as bad as it seems.

Although I was diagnosed as a baby (and I'm now 23) and I didn't get to experience eating all the yummy "normal" foods, I still had to experience NOT eating them while everyone else did. I, personally, hated having someone call me out & say "oh it must be so awful for you", "oh I'm sure we can find something for you to eat...". I just wished they would eat their food and let me sit there. I wasn't unhappy, it didn't really bother me.

As I tell most new people that I meet that hear about me having Celiac - I can't miss what I never knew about.

I know this may not directly apply to your daughters' situation, but I thought I'd share my opinion.

- Rachel.