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Living with Crohn’s Disease: My Story, Chapter 4

When I decided that I wanted to share my story, I spent hours contemplating just exactly how I thought it should sound. Was I aiming for funny? Did I want to inspire? How could I keep it from sounding like complaining? Should I be brutally honest about the gory details? Unfortunately, I let years go by without any action. I thought about it all the time, but never put pen to paper (or fingers to keyboard, as it happens). So with all that time and thought going into the prospect of putting my life into words, you’d think I was better prepared with what to say… and yet – here I sit, unable to verbalize what’s in my head. I want you to know who I am, and yet I don’t want to bore you with details that don’t matter. So how does one go about deciding which experiences are the ones that define their character, and their personality? The ones that someone will read and get a glimpse into who we really are… and feel, suddenly, like they understand me just a little bit better?

Honestly, I don’t know the answer to that question. But as I sit here and ponder it, there’s one thing that comes to mind about my early 20’s around the time of my diagnosis. The Gospel. Church was a big, big part of my life. To understand why this is important, or even newsworthy – I’ll have to back up a bit.

I grew up in a very loving home with parents who gave all their time and energy towards parenting us in the best way they knew how. And they did a great job. I mean hands down, they were great parents. They played with us, drove us all over creation, were genuinely interested in our lives and who we were, talked to us about all the hard stuff, developed lifelong relationships with us that go way beyond just parents and children. They are my best friends. They taught us love, respect and how to be good people. They made sure we learned responsibility, even when we did everything we could to fight against it. We spent family time together, we knew our aunts, uncles, and grandparents. I have stacks upon stacks of memories from my childhood, and every single one of them is happy. In every sense of the word, we were your typical American family.

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That being said, life isn’t ever perfect, right? And neither was our family. My parents were raised in the LDS Church, but after marrying and having kids of their own – they kinda got a little lax about attendance. If you’ve got kids, I’m sure you can relate – church with toddlers is HARD. And soon it became a habit, so as a child, I didn’t spend a lot of time going to church. We were raised with all the LDS beliefs, and always called ourselves “Mormons” but hadn’t ever really been in the habit of going. Instead, we typically spent our Sunday afternoons on bike rides and at parks. The sounds of Sunday Night Football could be heard throughout the house along with the little voices of Lindsey and I playing like little girls do.

One day, I remember my parents calling us into the living room and saying they wanted to have a talk. I can’t recall all the details, because I was 9 at the time and it gets a little fuzzy. But I can remember sitting on a giant black couch and the feeling of confusion, as my parents told us that they were going to spend “some time apart.” As Lindsey began to cry, I remember thinking, “Why is she crying? What does that even mean?” So I asked, “Will we still see Daddy?” And both of my parents gave me a, “Yes.” And that was enough. I didn’t understand what it meant that Dad was leaving with a bag. I didn’t understand the implications of “spending some time apart.” I didn’t even understand why Lindsey thought it was so sad… But it was as if I just knew it would be okay. I don’t even think I cried that day. I can’t explain it. I think the trust and love they created in our family, allowed a safe place for me even during this hard time. I think it allowed me to believe them, when they said everything would be fine.

Over the course of the following year, my parents held up their word. We saw Daddy. We saw lots of him. No amount of struggling with each other or issues between them, kept him from being the same old Dad we’d always known. Eventually, Mom decided to go be near her family, and so we were moving to Washington. In August of 1990, we loaded up a Uhaul truck and drove cross-country to move in with my mom’s sister and my cousin. We started school, made friends, blah-blah-blah… Let’s jump forward to the good stuff, shall we? Okay, so that Christmas, Dad came to visit. And guess what? He never went back. Literally, had his stuff sent up to Washington and my parents got back together. Yep, married twice – to each other. I mean isn’t that just the stuff dreams are made of? I know it was for Lindsey and I. Finally, our parents were back together in one place, the way every kid knows it should be. No more visiting Dad on weekends. No more missing him during the everyday moments. No more bedtimes without him. Finally, he was home and life was good. And in January 1992, they completed our little family with just one more baby girl, Taylor Renee.

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So what now you ask? Well I’ll tell you. While putting their family back together, one thing became clear: something was missing. A piece to the puzzle. The piece that would tie us together for time and all eternity. The Gospel. The Savior. The Temple. The beautiful doctrine that teaches us we can be eternal families. They knew it was there, and they wanted it. ‘Til death do you part wasn’t good enough. How could it ever be good enough?

In September 1995, we were sealed together for time and all eternity in The Church of Jesus Christ of Latter Day Saints Temple – Seattle, WA. Without even asking my mom & dad, I can tell you – it was one of the best moments of their life. I know, because I’m a parent – and I’ve done it. Best. Day. Ever.

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I hope that with this story, comes a little insight into what makes me, me. Because who I am plays an important role in the way I dealt with a life altering condition at the age of 20. While most kids my age were out partying and drinking, or better yet – going to college, I was spending 3 hours at a time, every 6 weeks in a hospital room getting IV infused medication to try and manage the growing inflammation inside my colon. I was meeting with doctors and making treatment plans. I was trying to explain to my bosses that I was sick again. I was trying to live on my own and pay my own bills while just barely managing to stay employed. This isn’t to say that I wasn’t having a good time. In fact, it’s just the opposite. They call Crohn’s “The Invisible Disease” and I understand that now, as I look back. I was so, so sick and yet I played. Oh boy, did I play. I played a lot. A LOT. I lived with great friends in an apartment and had a very active social life. I hung out with friends, I dated boys… And yet, only those closest to me saw my dark moments. The moments when I would collapse to the floor in excruciating pain after eating, because my intestines were so swollen that the food struggled to get through. The moments when my canker sores would hurt so bad, that I could barely open my mouth to talk. The moments when I would wake in the middle of the night with a headache so bad that I had to call my mom to come get me, only to find me passed out on the bathroom floor. The moments when I would be in a car and suddenly have to pull over and vomit violently on the side of the road. Or when my fever would spike so high, that the doctors couldn’t even believe I was conscious. And the moments when I would be on the toilet, as agony ripped through my body, screaming in pain and begging for sweet mercy, to please, let the pain be over. Please.

At age 21, I can count on one hand the amount of people who knew and saw that side of me. Sure, people knew I had Crohn’s Disease. My missionary, and soon-to-be husband “knew” too. But they didn’t really KNOW. Somehow I managed to live the happy life of a young, single girl with the world at her fingertips, all the while, struggling, fighting to survive this “Invisible Disease.” Somehow during all that, I built beautiful and fun memories with my friends that I can enjoy forever. And as I look back now, I have no idea how my two opposite worlds managed to collide into one. All I can do, is offer up a humble prayer to my Father in Heaven, and thank Him for allowing me to have both.

** Leah **

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  • Taimi January 4, 2015, 9:54 pm

    Thanks for helping me to see things in a difrefent light.

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