becoming aware

Not long ago, I wrote about one of many causes of importance observed in the month of October.You might also know that October is the month in which Breast Cancer Awareness is observed as well as Down Syndrome Awareness. I became (more) aware of another cause of importance this month. I mean, I’ve been aware of it for quite some time but it didn’t become something that was deeply personal to me until now.

My dear, sweet Connor,

You were (are) the best Darth Vader ever today. I had so much fun watching you wear your costume with pride and trade off your light saber for your candy bag at every house we visited this Halloween. Thankfully, you only worried about the candy once after we got in the car. I just finished sifting through your stash. Don’t worry; I only ate a few Skittles it wasn’t so I could steal some away for myself.

Just over two weeks ago, your dad and I watched as you fell asleep with the help of “milk of amnesia” so you could undergo an endoscopy to determine if you have celiac disease. And, can I just say that although I was nervous about the procedure, you were an absolute champ (I never would have expected anything else).

The worst part was when you fell asleep. The doctor had warned that it could be tough for parents to watch. I could already feel myself getting anxious as he explained how it would work and then as you counted (first on your hands) and then verbally to 13 before falling asleep, I realized the doctor was.not.lying. I nearly ran out of there. Thankfully, your dad was there to talk me through it and before ten minutes was up, the doctor came out to the waiting room to let us know he had finished up.

When we walked back into the room (as you drooled on the pillow), the doctor explained that he was of the impression you do have celiac but that we would wait to see the results of the biopsy to confirm. The head nurse said to eat, eat, eat ‘the gluten’ for the next week. When you woke up, you were so funny. The first words out of your mouth were, “Well, yeah!” when asked if you wanted to have your slushie reward for going without food/drink for over 12 hours. (A blue and green mix, by the way). You were happy to be wheeled out in a wheel chair, and you recovered just as quickly as you were sedated. This is also the part where I give the staff at Helen DeVos Children’s Hospital a shout-out. First-class.

A week later (last Tuesday), I got the call confirming that you do, in fact, have celiac disease.

You won’t ever understand the concept of “mommy guilt” but let me assure you … it’s a very real feeling. In the past two months (since this testing process started after you told me you tasted acid in your throat), I’ve wondered a million times how you got to the age of six without me realizing that gluten was on the attack in your little body. But, like the nurse said that morning … “Celiac? He’s not celiac.”; you just didn’t fit the “mold” of the symptoms of a typical celiac kid. It goes to show that this disease can be fairly silent in an otherwise seemingly healthy kiddo.

But, rather than dwell on the fact that we have this, we are going to choose to make the best of it. The really, really good news is that you can continue to live a very healthy life by a change in diet. The really, really hard part of that is that you do need to (significantly) change your diet.

Thankfully, you aren’t the only one and thankfully, people are really awesome. We’ve already received so much support from friends dealing with celiac or choosing to live gluten-free for other health reasons and although it hasn’t been easy, we’ve been living it  as best we can for over a week now.

There is so much to learn but let me assure you, we will figure it out. It will take time and mommy (and dad) will make mistakes but I promise you (promise, promise, promise), I will do my absolute best to make the best of this so it doesn’t completely suck becomes your ‘new (okay) normal’.

I know this has not (will not) be an easy change as you have to say ‘no’ to many of the things you love so much … goodbye forever, Cinnamon Toast Crunch/Reeses Puffs, but I’ve already been so proud of your acceptance and willingness to do what you need to be healthy. Like today, you walked up to that line of goodies in class and said, “I can’t have gluten.” That’s my boy.

I’ll love you forever, I’ll like you for always. As long as I’m living, my baby you’ll be.

your mama

I really don’t want to minimize the support we’ve received thus far. A good friend made us cookies the day after I found out and it was probably the single nicest thing that anyone could have done to help CJ realize that just because he has celiac disease doesn’t mean he can’t enjoy a good treat. And, another friend has been an invaluable resource as I’ve asked question after question about her own struggle with celiac. She brought me books and snacks and reassurance that we will be okay. And, to everyone else that’s reminded me that we’ll be okay, I appreciate you.

The other really great news is that the awareness of celiac disease is on the rise becoming more widely discussed (and supported) by the Interweb community as well as brands who understand the need to make quality (yummy) products for those living with celiac. Watch my blog roll for some of the amazing resources I’ve found already. I’m also considering how I can become an advocate for awareness as well. It can only help, right? It has never been easy for me to ask for help but I know this is not something that we’ll be doing alone. And for that, I’m truly grateful.

3 thoughts on “becoming aware

  1. Stacy,
    Bill was diagnosed with celiac almost 2 years ago and though he misses some things there are many great alternatives and substitutes out there. (Think no bake cookies with gluten free certified rolled oats…YUM). Good luck and think about investing in a good rice cooker 🙂

  2. Pingback: talking about celiac disease | a brand new ending

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