It’s been a year. In some instances, it feels like a lifetime ago. In others, it feels like yesterday. He’s healthy now. He walks, he talks, he has a larger than life personality. He never stops. Even right now, he is “yumping” on the couch and laughing hysterically. To think that all of these things stopped just because of gluten continues to fascinate me.
One year ago today, I was very impatiently waiting to get to our 2pm appointment at Vandy. Deep inside I knew the doctor would have the answer and my only prayer was to take the answer in and find a solution. For months, I had researched illnesses myself, and listened to tons of people diagnose Pierce themselves. From a brain tumor to cystic fibrosis to acid reflux, I had heard it all. It all made sense, and it all seemed crazy. No disease or sickness seemed out of the question, but so many of them were out of my grasp. A stomach bug I could fix, cystic fibrosis I couldn’t….and moms want to fix.
The experience at Vandy that afternoon is still so clear in my memory…in fact when I walk back in that hospital now I want to cry. I remember sitting in the waiting room for what seemed like 400 hours before they called us back. They weighed Pierce and he screamed the whole time. He didn’t want anyone touching him, but me so he clung tight to my sweatshirt. Dr. Moulton came in the room and after a very long minute of small talk, he turned the computer around to show that all four markers from Pierce’s blood test said celiac disease. He went on to explain celiac crisis and insisted Pierce be put in the hospital for the next week for healing. All I wanted was someone to fix him…and the hospital was going to fix him.
For the next five days, Pierce changed drastically. Day one, he clung to me like a tree frog. He cried every time the nurse walked in the room, and he struggled to stay awake. Day two, he would at least look at the nurse when she walked in without crying, and by day 5, he laughed, played, and even allowed the nurses to hold him. He was becoming the boy I remembered. Gluten had taken over his brain and slowed development. Gluten had caused swelling in his joints making walking or even standing completely painful. It had destroyed his intestines making it impossible for his body to break down food and get any nourishment. This one little piece of his diet had put a stranglehold on his life and it was slowly letting go.
Over the past year, this boy has doubled in weight and grown off the charts in height. He has developed quite the daring personality which means we often find him climbing the outside of the stairs, jumping off forts he built himself, and attacking his much older and much bigger brother. We went to Vandy for his year checkup and Dr. Moulton walked in, looked at Pierce and said “I am amazed”. He was so impressed with the recovery and the child he saw in front of him. Those few sentences made my day, my week, and probably my month.
Over the past year, I have had several people reach out to talk about celiac disease, get advice, and just talk through symptoms. I’ve had several people tell me they don’t believe gluten issues are real….which by the way, just don’t do. Even if you believe it, just be quiet. But more than anything, I’ve had so many people love on my son. A man I work with leaves gluten free treats on my desk to take to Pierce. Our R&D manager at Gigi’s took such amazing steps to ensure Pierce’s birthday treats were gluten free. Pierce’s teachers made parents bring gluten free foods to classroom parties. All of this things make me cry just thinking about them. It’s little things to make him feel normal…or maybe to make me feel normal. Whatever the feeling, it means so much more than people will know.
I had stopped writing blogs because they were making me sad. And while I type with tears in my eyes right now, I’m not sad. I can’t be…he’s laying next to me on the couch, exhausted from all his “yumping”.
Here are a few images of Pierce right before and during his stay at Vanderbilt:
And here are a few after:
My favorite image is below….these images are about a year apart in front of the light up frog at Vandy Children’s Hospital. Thank the Lord for wonderful doctors, nurses, family and friends who supported us through a very crazy time. The Tucker family will be visiting Vandy today with tons of gluten free treats for the nurses on the 7th floor. They won’t remember why we are there, but we will.
Adventures in Celiac 