All of it.
Today I was reminded of a time not that long ago, when I first heard of this thing called “celiac.” Another mom wrote about her son’s celiac disease, and how sad it was to see a certain picture of him from before his diagnosis. It immediately made me think back to when my daughter was younger, and how she was struggling with this disease long before we knew what it was.
My daughter was diagnosed with celiac disease when she was 22 months old. She hadn’t gained any weight in 6 months at this point. Foods that she previously ate were things she no longer would have anything to do with, and our pediatrician was telling us to smear cream cheese and peanut butter on crackers and feed her whatever she wanted just so she would eat. In the weeks leading up to her diagnosis, we were told to give her juice, even, just as a means of keeping weight on her. She was slowly ruling out things she would eat, and we didn’t know what to do.
She had skinny arms and legs, with a round tummy. It happened so gradually, I think we weren’t even aware of just how bad it was. When I look back on the photos of her from that time I want to cry. She is emaciated – her beautiful hair is thin, her arms and legs look like little sticks, but her tummy was incredibly distended. She is smiling in many pf the photos…she was such a happy little tyke! And that makes it all the worse, because she was starving to death, yet was still such an upbeat little soul.
I remember going in to the gastroenterologist’s office, where he took one look at her and told us he was checking her in at Children’s Hospital first thing in the morning. Suddenly everything was happening super fast. So, on Wednesday we checked in. They put a feeding tube in through her nose and down her throat to her stomach. It was a holiday weekend (Labor Day), so we were there for 5 days until they could do the endoscopy and biopsy. They were remodeling the hospital at that time, so we had roommates for a few days. When we would finally get her to sleep, the other child in the room would start crying, so none of us got much sleep. We did a lot of walking around our floor. Maeryn would sit in one of the wagons, or in one of the plastic kid’s cars, and my husband would push her while I pushed the metal stand that held her fluids. Lap after lap after lap, sometimes in figure 8’s. She would say “goodnight” to the fishies in the fish tank, or “hello” to the nurses….
I remember her little pleading voice crying for me, “Mommyyyyy!” when they would come to do blood tests, or take her temperature, or blood pressure, or if they needed to pull her NG tube out and put another one in through her nasal passage. It is remarkable how helpless you feel when your baby is crying for you, and there is nothing you can do except hold her afterward and rock her to sleep. The hospital itself was mixed for us. The room situation was tenuous…sometimes we ended up with roommates coming in at 1 in the morning, and the doctors doing rounds didn’t seem very helpful. On the other hand, the nurses (especially the nurses!!) and the GI were beyond phenomenal, and the playrooms on each floor were a god-send. I am so grateful to the companies that donated the funds and toys to keep each one stocked with clean, fun toys for all of the kids there. It is funny how you quickly learn to appreciate the small things in life and how they have the power to impact you in ways you never imagined.
Since they had not done the official endoscopy yet, we had to keep trying to get her to eat meals that contained gluten. Imagine that…you’re told that something is poisonous to your child, yet you have to keep feeding it to her….when she is refusing to eat anything at all.
The day of her endoscopy and biopsy we walked her down to the floor where the procedure would take place. I was pregnant at the time, so after the initial prep, my husband had to carry her the rest of the way for the procedure. She seemed fine until the door closed and she realized I wasn’t following behind her. I watched her through a small circular window as my husband, dressed in scrubs, took her step after step, farther away from me. Her little arms were reaching back and she was screaming for me. I sat in the waiting room, crying. When my husband came in, I confessed to feeling silly for crying – after all, many people in that waiting room were probably there for things that could not be as simply treated (more on that later perhaps, eh?). He confessed that it was torture having to hold her down while they put her under. He said he felt like she was so scared, and didn’t understand why he wasn’t getting her out of there, but was instead, holding her to the table. We both spent the rest of the time waiting and feeling miserable.
She got to watch TV at the hospital, something we hadn’t really let her do yet at home. It is here where I learned to embrace Elmo. Yes, the red monster who I had previously loathed for not being a part of my Sesame Street upbringing was now our salvation. Brent went down to Target and bought some Elmo DVDs so she could have something to watch and be distracted by when the actual show wasn’t on the TV in her room.
It made her happy. And that made us happy.
Her scope and biopsy proved that it was, indeed, celiac disease. We received a “pamphlet” about ROCK (Raising Our Celiac Kids) which was 49 pages long, and I used that packet like a pocket-bible for the next few months.
This post isn’t about learning how to cope with the diagnosis, or her follow up food-therapy so she could learn to eat again. It isn’t about the trials of having a feeding tube for a few months, the doctors who made the rounds, or the $28,000 hospital bill that accompanied them. No. This post is about always keeping close to my heart the image of my little girl. How something as inane as a protein found in food could threaten to take her away from me. I look at photos from “before” – a little stick figure with a big tummy, and then I look at her now – a healthy, thriving little girl, and it reminds me of how precarious things are in life, and makes me hold her a little closer. No matter what the sacrifice, and no matter how annoying and mad and sad this whole gluten nonsense makes me. When I look at her I know it is all worth while. All of it.