One week after Pierce’s GI appointment, the nurse called while I was at the office. Very quickly she said that Pierce’s liver levels were still high and he needed to return in a few weeks for another round of blood tests. The moment the phone hung up, I started crying at my desk…..that cry where you make no sound, but you make the most awful face. I ran into the bathroom and tried to stop the tears by staring at the light, which only increased the tears as the lights were drying out my contacts. Finally I got myself together and went back to work. The entire day I sat trying to find all the ways I was going wrong as his mom. I already was mad at myself for not researching body wash, shampoo, lotions and house cleaners. I also decided I should have taken the time to write an entire manual for his school and maybe should do the same for any daycare he stays, like church.
I got home that evening still super upset with myself. I could barely talk to my mom about it because I was convinced everyone would think I was failing. Nathan asked a ton of questions I wasn’t prepared for….mainly because I asked the nurse no questions. I just hung up and cried. I figured I would get more clarity when we went back in for tests.
The next day I arrived early at the office, as I always do. I was fixing coffee and reading through emails when the nurse called again. She said she just felt that she needed to call and provide more details. She continued that Pierce went in to the hospital with liver levels of 170, and a normal person would be 30 or below. At his blood work, he was at 57! So while the level is still high, it is a drastic move from where he was and they just want to assure that number decreases consistently. She ended by saying “don’t forget, you are doing a great job mom”. Talk about a moment….I cried for a second day in a row in my office, but these tears were purely out of gratitude. It was a moment God used to remind me that we are on the right path, and not to get lost in the blame game….just to continue to focus on making small improvements.
I try not to tell Pierce’s story a lot anymore. Mainly I feel like people are sick of hearing about it or don’t care, but this weekend at a family wedding I have talked about it a lot. It is therapeutic for me to discuss his situation. It made me realize….the people that love our family won’t ever tire of talking about him because they are just as thankful about the little improvements that we are each day. And maybe someday someone will hear his story and it will help them or their family.
On a side note, we have all gluten free cleaners, lotions and bathing products in our home. While I ordered tons of stuff online, I discovered a line of child and adult skin care with no gluten at Target. It is called Shea Moisture and they label all of their GF products clearly on the front. I have debated about making my own with essential oils, but am waiting it out until I find someone with more “oil intelligence” than myself to volunteer to make it so I can buy it. I am sure that person already exists….I have just been too lazy to find them.
I am off to spend the morning relaxing in the mountains, awaiting a wedding and my new sister-in-law. Cheers to the newest Tucker:)
Adventures in Celiac 