When Life Hands You a Mystery

I planned on adding Part II of Keira’s story tonight, but instead I think I’ll just vent about the not so fun parts of healing.

I’m kind of not a fan {at all} of mysteries when health is concerned–especially when it comes to the health of one of my children. And Keira has always been one giant health puzzle. It seems for all her life we never knew what was going on with her little body. Weird symptoms would come on, we would try to “fix” them, and then we would try again. We would see many doctors, stay up all night cuddling the pain away, and many nights I just prayed and wished on stars for a resolution to her health issues. There were pills we tried that never truly worked. We saw specialists who couldn’t figure her out. We actively tried to figure out the mystery! As you know, we eventually did. But here’s the funny thing, Celiac Disease isn’t understood much beyond the classic presentation and the knowledge that gluten is the trigger. So really, we closed one chapter of mysteries just to open another.

Somedays Keira still gets tummy aches. Though they pale in comparison to what they were last fall {and all the years before that}, they still creep up. And it’s usually about the time I start getting cocky about how well she’s doing. I seem to be mid giving-the-finger to gluten when one of these tummy aches will happen.

Super Bowl night 2014 was one of those times. We were having a good day. I’d made a decent amount of food to snack on while we pretended to watch commercials. Keira really liked the bacon wrapped figs I’d prepared. She also loved the Asian rice salad, and seemed to be gobbling it down just fine.

The night before, she had complained about belly pain around the center of her belly. It’s as if we could have traced a circle with about a one inch radius around her belly button, and that’s where all the pain was. It grew in intensity, and we sat through it with her. We tried rubbing peppermint oil on her, using a heating pad, rubbing it in a clockwise motion, and trying to distract her with sweet words and stories. Nothing was helping for quite some time, and then suddenly it subsided. As quickly as it reared it’s ugly head, it also left. We wrote it off as some minor hiccup in the healing process. But 24 hours later, my baby was in screaming and crying out in the fetal position.

Here is a time when, as the parent of a celiac child, you feel completely helpless. I felt like there was nothing I could do to take this pain away from her. Before we had the diagnosis, I could at least rush her to the ER in hopes of getting answers. Doing this made me feel like there was a chance she could be helped and the pain would be magically drawn out of her body. But knowing she has celiac disease, I knew there wasn’t much of anything an ER doctor could do for her. Short of pumping her full of pain killers, I didn’t know how thy could help her. Yet I had this urge to take her and seek help. And actually, that’s what we ended up doing.

Being familiar with her pain patterns, Matt and I knew this seemed extreme for Keira. She was rating the pain at a 9. She usually tops out at a 7. Also, all the research I’d done for months and months was replaying in my mind. I kept thinking about appendicitis. It could easily make sense since so much of her body was inflamed and so many of her organs had an itis attached to their name.

Her pain had migrated from her belly button to her lower right quad over a 24 hour time period. This was classic appendicitis. She could not even sit up, let alone stand up. With all of this weighing on my mind, I told Matt I thought we needed to take her to the ER. I don’t know how much of me thought it truly was appendicitis and how much was me just seeking somebody, anybody, to help my baby–but we did decide to go.

Matt carried her to the car, and we both went with her to the hospital. I knew that we might not get any real answers, but I was hoping to at least rule appendicitis in or out. On the ride there I remember thinking about an article I’d read that talked about undiagnosed celiac patients receiving unnecessary appendectomies. I was worried that Keira was a diagnosed celiac patient suffering from celiac pain that mimicked appendicitis. Not that I wanted her to have inflammation or surgery, but a small part of me did want answers. I’m tired of not having answers.

When we got to the ER, I made sure the doctors understood she had celiac disease. I told them I thought the pain she was in now was very different from her previous tummy aches. For one, she couldn’t move without crying out in pain. It was also her highest rating on the pain scale ever. And it’s location and migration looked just like appendicitis. But deep down I felt it was her celiac inflammation acting up. I felt this way because just one year earlier we were at the ER for the exact same reason, but we were weaning her off Pentasa at the time.

An ultrasound and CT Scan proved my gut feeling to be correct. I was glad to hear that she didn’t have to have those complications on top of what she was already dealing with, but I also felt defeated. I felt out-smarted by the gluten devil. I felt like I let my baby down. I think it’s part of the mom DNA to always place blame on yourself and question everything you’ve done that could’ve led to the very moment you couldn’t protect your child the way you wanted to.

After a very long night, we went home. With us, we brought a very tired girl who seemed to be in less pain. Keira feeling better is always a good thing, but why she was ever in pain in the first place remains a mystery.

I don’t know if it’s who I am or if most people are like this, but I do not like being clueless when dealing with illnesses and diseases. I always want to know why–no matter what the truth is, I always question it. I’m a very trusting person with other people, and I usually don’t think twice about somebody’s intentions. But when it comes to everything else {be it health, education, politics, etc}, I question. I probably over analyze and ramble on in my head, but I am just wanting answers. I want to figure things out. So when I can’t figure out why my innocent little girl is holding her stomach, curled into herself like a baby, all while moaning in pain, I GET MAD! I don’t like this fact, but this is a vent post and so I am venting.

I think there is a lesson for me to learn while we go through life on this journey. I need to not be mad. I need to not let anger and frustration distract me from being there for my daughter. When she needs me, I want to give her my 100%. Well, actually I always want to give her and her siblings my 100%, but I’m sure you know what I mean.

As Keira has lived her life, she has truly inspired me. She has to be the toughest person I know. She rarely complains about anything because she knows true pain. If I were her, I question whether or not I could dig myself out of a pity party. Where she persists and takes everyday as it comes, I’d probably wallow and look for blame to place on something or somebody for my situation. And that is what is so beautiful about her spirit, she just keeps going. I’ve seen this scenario play out many times in her life. She never seems defeated and she always rises out of whatever crappy ashes life hands her. This girl might have my eyes and passion for art, but she most certainly has a better attitude than I would have. She keeps me in awe and feeling truly blessed to be her mom. I have no idea how I got so lucky.

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