My son JT is what some people would call a light bringer. He is this little spark plug of something wonderful that makes people feel happier, lighter.
He is the kid with the sly smile you can share an inside joke with, and he loves being an insider.
He is a middle kid who spent the first three years being "the baby." As in "who's got the baby?" or "where's the baby?' Now the new baby, Wade, fills that role nicely. And JT is in the middle. He so wants to be loved by the older kids and play the games they are playing. He will play tackle football with his big brother and never give up, ever (it is quite insane). He will play dress up with his big sister and let her run the show (quite frankly his sister Lucy won't play with him, or even let him in her room, unless she runs the show).
When he is included, he feels the love.
A little over a year ago,JT was failing to thrive. He was losing weight, he was sick all the time. When he first started to get sick, it just seemed like he was being really unruly and cranky. We thought it was because of the new baby, Wade. We overlooked other symptoms and tried extra love and attention. Didn't work.
He started to have severe diarrhea. We thought it was nerves.
He started to have massive, I mean massive, fits all the time. About everything. It was hard to take him anywhere. He was miserable.
He was already speech delayed, but his progress stalled completely.
He started throwing up frequently. He had no energy. And he was losing weight.
One afternoon when I laid down next to him to settle him down for a nap I thought he was laying on some hardcover books. I went to move them and realized I was feeling his bones, they were sticking out that much. I gasped and yanked my hand away.
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| This was how sick my sweet boy was. He looks like a malnourished child you could help with only the money it costs to buy your coffee. |
What the hell was going on? I took him to the doctor and thankfully got a quick diagnosis of Celiac Disease. The only thing I knew about Celiac Disease was that Elisabeth Hasselbeck from "The View" had it. I was in shock that my son had a disease and the fact that the conservative chick on "The View" and I had something in common.
I immediately went on all kinds of different web sites and spoke with a dietician. Long story short, JT has an autoimmune disease that makes it impossible for him to process gluten. And my friends, gluten is in a whole hell of a lot. Food, medicines, soaps, shampoos, candy.
This blog post is starting to feel like a very special episode of a sitcom. Where at the end I would do a short psa and give a 1-800 number in case you need more info.
Okay, it is a very special blog post and I will give you a number and web address for more info. Because damn it, discovering JT's Celiac Disease saved his life and I am forever grateful.
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| BEFORE |
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| AFTER |
Out of all of this actually came a keener awareness and appreciation for food. Quite simply, because we can't afford much. So there is not a lot of waste around here.
Sometimes my husband and I have been known to sneak gluten food in the back door after the kids have gone to bed.
It is like we are drug addicts getting a fix and then we do feel a little guilty after.
We have all been gluten free for over a year. My other kids do not have Celiac and they can have gluten when they are out of the house. But we decided to make our house a safe zone where JT didn't have to worry about feeling left out--he's included. He feels the love.
So in the words of another one of my comedic favorites, Kathy Griffin, Gluten can suck it.
If this special blog post was too much, please enjoy a clip of one of my favorite comics. She is raunchy and she swears. Love her.
1 comment:
I just found your blog after doing research on Celiac disease. Although my daughter is 10, she looks exactly like your son did before his diagnosis. Her bones stick out but she has a huge belly. Her once plumper arms and behind are nothing now. She has dark circles under her eyes. She's been constipated or had diarrhea for years and we were sent to a gastro counselor to "get her potty trained" at the age of 7 although she never had problems urinating.
She has big, floating stools now, but still looks 9 months pregnant at night. She is pale, super cranky and has high anxiety for no reason. She craves goldfish but has a poor appetite, lack of enamel on her adult teeth.
Se is short and barely weight appropriate, although her father, brother and I are all tall.
She is a cancer survivor (age 2, Wilms Tumor) so I am always afraid, but I think she has cd after doing research this week. Everything fits. It all makes sense. It's like a light bulb just went on in my head. No dr. Has ever even suggested having her tested for a food allergy, but I'm going to her pediatrician wit her tomorrow and insisting.
As hard as it might be to go gluten free, I will happily do it if it means she begins to thrive and grow.
Thank ou for the photos of your son. This has confirmed it for me.
Susan
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