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Celebrating Rare Disease Day: Madison's Story

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  For the past two years, I’ve had the privilege of writing stories for my job about families in our school district who are navigating life with rare diseases. I’ve shared their diagnoses, their challenges, their resilience, and the ways our community has rallied around them. Each story has deepened my understanding of what “rare” truly means, not just medically, but emotionally and practically. This year, Rare Disease Day feels different for me. This year, the story is personal. It’s a reminder of the journey our daughter Madison has walked with courage and grace. It began in sixth grade with bruises. They were on the backs of her knees. Dark, stubborn bruises that didn’t fade the way bruises are supposed to. We might have brushed them off as playground bumps if my sister hadn’t noticed how long they’d been there. That comment changed everything. No one prepares you for the phone call telling you to go to pediatrics oncology immediately because it could be leukemia. Those ar...
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Making History

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We might not have painted a masterpiece, but we sure had fun trying.  - Cherry Hunter Surreal. It's the only word I can think of to describe most days. I still struggle to come to grips with our new reality and a distinct longing for things to be the way they once were. Never was that feeling more present than as I made my way about town, safely social distancing, to photo document this time. As I rolled through the 150 photos I took on a short excursion, this one told me so much. Here, a barricade was placed to keep people out of a basketball court, the rims and nets all removed to prevent any play. Wow! The weather quickly turned from sun to cloudy as cooler weather rolled in and an impending threat of an April snow. The weather saying more than just that, but perhaps a foreshadowing of my mood. Unfortunately, most days beginning sunny and full of optimism. Then, quickly turning cloudy and gloomy.  It's no secret I have felt the tug on my heart many times ove...
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Parenting During A Pandemic

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If you want to cure the world, don’t emanate fear, emanate love.  - Ram Dass Many a blog post has started with "what a week!" Never did I have any idea that would be truer than it is now.   When the COVID-19 pandemic began, I sat down to write thinking it would be, at a minimum, interesting to look back on some day. Here we are, several days later, and I'm still writing, so I just keep adding until I finally find time to post.  Day 1 It's Monday. It's the first day of spring break and I got up like any other day to go to work. Things are stuck between normal and what is a semi-new normal. The university I work for has moved classes to online instruction through part of April. I expected a vacant campus, but not for how long this could be.  I'm getting used to having a plan for the day and then promptly throwing that plan out the window about 45 minutes into my workday. The girls are happy it is spring break and looking forward to sleeping in. I ...
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Seeking

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You are the only person on earth who can use your ability.  - Zig Ziglar Recently, I've been hunting through our home for a blue folder. It seems silly. Honestly, who needs a blue folder that bad?  This particular blue folder contains the only remaining print outs of the stories I wrote from my college creative writing courses. They say you always remember the precise moment you fall in love with something. Your spouse, your first born, perhaps even a hobby. For me, I remember the precise moment I fell in love with writing.   It was an "optional" course on a creative track to achieve my undergraduate degree. I had other options but was drawn to writing for some reason. I knew from the first day I entered my non-fiction class, it would be my favorite. I can remember the classroom like it was yesterday, a lawnmower running in the distance and the smell of freshly mowed grass wafting in the windows. Professor of the year entered the room with a flair I'd ne...
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Suite 514

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Be somebody who makes everybody feel like a somebody. ---------------- It's hard to live in the midwest, least of all Iowa, and not know of Carson King. The sign toting individual asking for beer money to his Venmo account, who later raised millions of dollars for the University of Iowa's Stead Family Children's Hospital. This isn't a Carson King story. Sorry if that's what you came here for. It is a story about the kindness and good in the human spirit. As a parent, no one wants to think about the harsh realities life can and sometimes does deal. The pain of assisting a child through an illness or, worse, losing a child to that illness or tragedy is not a reality I'd ever want to face. Every three months for the past two years, I have entered Suite 514 at a local children's hospital with daughter of the year #1. When I first entered that door, I was not prepared for what I would see on the other side.  Suite 514 appears as a very non-descr...
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Letter to My 16 Year Old Self

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The secret to staying young is to live honestly, eat slowly, and lie about your age. - Lucille Ball Dear 16-year-old mom-of-the-year, Happy sweet 16. I know you waited for this day for a long time. It seems like you are about to leap into adulthood, some newfound freedom, but before you take that jump, take a deep breath. For every jump you take from here on out leads you on a path to your future, and it's one lovely ride.  Look around at those friends at your party. It's not a huge friend circle but larger than most. These girls have been here through almost every moment of growing up and will continue to be. In fact, many of those friends are still going to be there for you 30 years later. Cheering for you in a whole new way to achieve every dream you have, and sending you the Twizzlers you so dearly love when things don't go quite right. By the way, lay off the Twizzlers. You've been driving for two years so I can't even say congrats on getting...
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Being OK Being Me

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When we seek to discover the best in others,  we somehow bring out the best in ourselves. - William Arthur Ward I remember the day well. The day my friend stopped talking to me. I was 12 and it was as I entered the gym for volleyball practice. The difference in the air was palpable, weighing on me like a brand new coat that hadn't quite broken in to my body yet. The talking stopped, the sideway glances began, and then just as quickly, no one would speak to me. I remember scanning my memory to recall everything I had done, what I had worn, what I had eaten, how many times I had blinked in the past 24 hours. I tried speaking to someone and was met with a cold nothing like this midwesterner has ever felt. I still feel that pit in my stomach.  Why I can remember this instance better than I can remember what I ate yesterday is beyond me?! Perhaps because it left an indelible mark on me, one I'm not sure I'll ever shake. It happened more times than I could count...
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