Month: May 2014

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.

The Start of our Journey

Recently, I sat down with my computer and thoughts when Matt was out of town and the kids were all in bed. Nary a creature was stirring, but my ideas were bouncing around and coming together without my trying to make it happen. I had been bottling up all of my emotions, thoughts, and ramblings about Keira’s health for quite some time. You could say I’d been keeping it all to myself {mostly} for the past six months, but in reality I’ve been frustrated and holding back for over seven years. 

So, a few days ago I sat down to let it all out. It took me a matter of a few hours, but 13 pages all about Keira’s health poured out of me. I felt drained of all creative energy afterwards. Though that can be damaging to my career, it felt nice for a change. I felt like I had confessed to a crime and the weight of knowledge I didn’t want was finally lifted from my shoulders. There was freedom in the act of writing. Ridding my brain of these ideas was long overdo.  This sounds a little dramatic, but that’s how us passionate people are. And if you can’t put up with that, then this certainly isn’t a place you will want to spend much time. Just FYI…

So, I thought for my first official post, I’d tell the first part of her story:

 

“I think up until a year or two ago, I had never heard the word ‘celiac.’ I didn’t know what gluten was until a year or so before that. And what I knew about it could be summed up in a sentence—something like, “ummm… I think it’s bad for you.”

I didn’t know about these things, because according to me, I didn’t need to. My kids were fine. I was fine. My other family and friends were all fine. I didn’t need to be up until 2 am several nights in a row for months on end looking up ridiculous amounts of information on mysterious symptoms. If we had a complaint, we went to the doctor. They know everything there is to know about illnesses and diseases, so why should I worry about it? This was my line of thinking for a short while before I started to think and reflect on what was happening before my very eyes.

Blame it on the fact that we had several babies back to back and with that came enough sleep loss to consider ourselves delirious and weary for a decade, but I did very little reflecting the first few years of motherhood. I was blissfully unaware of anything that did not meet the day-to-day needs {not wants} for my rapidly growing family. I was too busy. I spent my days changing diapers, holding crying babies, being miserable and pregnant, sneaking bites of chicken nuggets and mac ‘n cheese, chasing toddlers away from toilet water and the middle of streets, teaching at night, writing a book, nursing or pumping, and trying to manage my new mom life. There was hardly a moment to even consider doing anything besides surviving. I do admit that every once in a while–usually while nursing or pumping and exhausting all of the channels on cable  television–I would take pause and think about life. These moments were few and far between, but they did happen. Keira’s health popped its little head into this window of time every now and then. As it did, little bits and pieces of her health journey started to come together like a puzzle. But instead of starting with one piece and finding the next one that fit it, we started with a random piece. And it did not come together smoothly after that, either. It was like we would find one of the corner pieces, and then another random piece not knowing where it belonged. I knew I had puzzle pieces, but I did not even realize they all belonged to the same puzzle. None of them seemed connected at first, but I eventually learned they were all part of the same big puzzle. I started to rethink everything I knew. It made me start to question what I’d always held to be true.

Sometime in the last 7.5 years, let’s just say about 4.5 years ago, I really started to realize something was different about my daughter, Keira.

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She is our second daughter—just 13 months younger than her big sister. She came into my arms on a fall night in 2006, a screaming, pink, plump, dark-haired beauty. I fell in love instantly. We had a bond like we knew each other in ways that no other person could know. The day after she was born, I remember photographing her like I was getting paid per picture. Her daddy left the hospital that afternoon to go home and take a shower, so naturally, I dressed her up in several outfits and made sure to capture each one on camera. We snuggled. We slept. We even got yelled at by a nurse for sleeping together in one of those “unsafe,” gated hospital beds. That’s neither here nor there… , but I was simply smitten with my new bundle, and we were released as scheduled, to go home.

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It is incredibly difficult to remember much of Keira’s first months at home. I really hate to admit this, but I can’t remember so much because she completely blindsided me, and I was consumed with all things that come with having a new baby. I had no idea just how different two babies, from the exact same parents, born just a year apart, could be. Where Kenli, our oldest, was mostly quiet, happy, slept through the night from the get-go, ate like a champ, did everything according to the books, and just loved her little world—Keira was almost completely the opposite. To say there was a stark contrast between Kenli and Keira’s infancy would certainly be an understatement.

I remember one of the first signs that something with little Keira’s body was different. My husband was out of town, and my mom was visiting us. We remarked at how bloated her belly was. It was rock solid. The poor girl hadn’t had a bowel movement in days. I remembered in my childbirth class just a year and a few months prior, the nurse commented how different babies have different bathroom schedules. Well, Keira’s was certainly different from Kenli’s, but she was so young I really hadn’t noticed a pattern for her movements yet. I didn’t know if a week without pooping was okay, but in my gut I did know. I could see the signs in front of me—a grumpy and grunting baby, a bloated and hard belly, a restless infant who looked at me with the saddest eyes. After putting a call in to the doctor, we were prescribed a suppository for her. It seemed to help, and naturally I was happy it worked, but the next few months proved to be tougher than I ever could have imagined.”

I’ll end there for now, but I’ll be back tomorrow to share more of Keira’s journey.

Welcome!

ImageAs I’m sure many of you reading this already know, my sweet girl, Keira, was diagnosed with celiac disease about six months ago. And what does a writer do when given this little slice of lemon? Well, she writes about it. This is my therapy. As an educator, I also wanted a place where I could share information with the masses–and I think I’m using that term lightly since maybe my mom and a couple of friends are probably the only ones reading this. But I don’t care. I just want a place where I can vent about our bad days, celebrate our successes, update on doctor visits, and basically keep track of Keira’s journey. And if our story enlightens anybody along the way–all the better!

During the past six months, I have spent many hours reading articles and listening to webinars about celiac disease and the devil that is gluten. I have learned so much because I wanted to. I am not a doctor, and you should not take everything I say to heart. I’m just a mom, and sometimes I write really late at night or very early in the morning–I also haven’t hired editors to go over my writing with a fine tooth comb. So, take what I write and if it resonates with you, do something about it. Ask your doctor, look it up, talk to friends, and reflect on your own life. Search for your own answers while letting my little piece of blog-land serve as a springboard to your journey.

My other goal in creating a blog was to save you guys the time and energy (and coffee) it took me to learn about this disease by compiling a bunch of information right here. It is my hope that while sharing Keira’s story, our struggles, our gains, and our questions, you will find something you are looking for. Whether we can help you answer a question, or just entertain you, I am glad you are here.