running for my life

I’m a runner.

That’s a sentence I never thought would apply to me. There was a time I didn’t get running. There was a time I didn’t like running. There was even a time I resented it–-it represented something I wanted to do, but didn’t believe that I could do.

Lately, I’ve been able to say I’m a runner and feel comfortable about it. I still joke from time to time that I know I don’t look like a runner, and I know I’m not built like a runner. But I’m a runner. These days, I’m much more comfortable with how I’m built because I realize now that this is a runner’s body. I’ve waged war against this body for most of my life. (That’s something I could write pages about.) But this body has carried me through a 20-mile training run. And in just a few days, I will cross the finish line at my first marathon.

I’m running because of Down syndrome. I’m running for Down syndrome. I’m running for my life…

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Rewind about 18 months. I was in a very different place–spiritually, emotionally, physically, mentally. There were a lot of things going on in my personal life–dark things, hard things. My marriage was deeply troubled. My job was difficult. I spent a lot of time on my own trying to make it with two kids, missing home and my family, loathing my post-partum body, feeling really bad about myself, and–-if I’m honest–-feeling sorry for myself. Somewhere in the day-to-day, I got lost.

My husband, meanwhile, was doing things–important things. Hard things. He was setting and reaching goals. He was pushing himself to do things–like running marathons. And that was hard for me. I did the best I could to hide that, but I don’t think I was very good at it. I did the best I could to show support in the ways that I knew how, but I felt like I’d been left behind.

And then one day, as I scrolled through my Facebook newsfeed (that’s often dominated by posts about Down syndrome), I stumbled upon this group called I Run 4. The premise is simple–to match children with disabilities, especially mobility issues, with runners who would run for them. At the time, I Run 4 was just a few thousand members strong, if that. Now, it’s grown to over 25,000 members and includes kids and adults with all kinds of disabilities (not just mobility issues), as well as different types of athletes.

The stories I read were nothing short of inspirational. Here were these kids that would give anything to be able to run, or play with their friends, or do any number of the things other kids get to do. Kids that work harder to accomplish things that most of us take for granted. Kids that have been through surgeries and treatments and therapies and were still smiling and loving life.

Kids that are tough as nails.

And there I was, wallowing in self-pity, in a pretty bad place and in need of some major change. And it hit me: if those kids could work so hard, what was my excuse?

I wavered for a couple of days before signing up–what if I failed my buddy? What if I couldn’t make it as a runner? It had been years since I’d laced up my running shoes, and I was at a point I thought I would never run again.

But I signed up. I signed up to be a runner.

I waited for about 3 weeks to be matched, and I was matched with a fierce little boy named Shane. Shane has a mega-watt smile and soulful eyes, and he happens to have cerebral palsy. The minute I saw his picture, I was in love. The minute I read the first letter from his mom, I knew I’d found someone to respect and admire–she is an incredible advocate, sharing his journey with so openly, and stopping at nothing to make sure he gets the best care.

Shane has been through so much at his young age. Yet he’s determined. He’s loving. He’s happy. He’s a valued member of his family. And he changed my life. This little boy–-who lives hundreds of miles away from me–-became not just the reason I put my running shoes back on, but also the reason so many things in my life changed for the better–-I renewed my faith and I grew closer to God. I started thinking about pushing myself a little harder. And I wondered if maybe, just maybe, I could run a half-marathon.

And then at church one day, they announced they were forming a running group to train for our city’s famous marathon and half-marathon. They challenged beginners to be bold, to try something they’d never tried. To connect their physical life to their spiritual life. And to trust that God would be the source of their strength during their training. So I signed up to train and showed up terrified the first week. But then I made friends. Really, really great friends. And I registered for my first half-marathon. And then I ran it, with my really great friends, and it was awesome.

Thanks to Down syndrome, I found I Run 4. Thanks to I Run 4, I found Shane. And thanks to Shane, I found myself again.

I’m running for my life.

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For the past few days, I’ve been struggling with an article I read in which a mother details what she calls the “merciful termination” of her baby with Down syndrome. I’ve struggled because I think there was a time in my life I would have agreed with this woman. There was a time in my life, after prenatal tests came back abnormal, that I wrestled with what I might do if my baby had a grim diagnosis. I drove myself mad trying to decide what would be the merciful choice. And I had friends and family in both camps. People I never would have expected to support me if I had chosen not to continue the pregnancy said they would support me no matter what. And that scared me. I remember wondering why they weren’t trying to convince me otherwise. (I feel like I should mention that my husband never wavered–-he wanted nothing to do with talk of terminating the pregnancy. To him, it wasn’t even an option worth discussing. And I’m so thankful for that.) I also had friends that reminded me that above all else, my job was to protect my child’s life. That the strong and merciful thing to do would be to love that child fiercely, to give him a chance at life, no matter how short or difficult it might have been. I remember standing in the shower one day, sobbing and praying through my tears before the follow-up test results came back, “Please, God, I can handle Down syndrome. I can handle spina bifida. But I don’t think I can handle the others.”

It doesn’t matter what I thought I could handle–I think God knew that at the time, I couldn’t even handle Down syndrome, as my test came back normal. And although my pregnancy continued to be difficult, I didn’t have to think about whether or not I would have to make the choice to continue it.

I look at my son now and I shudder to think what I might have thought was the merciful choice had I known then that he would be born not just with an extra chromosome, but also with a life-threatening medical condition. I could have been the woman that wrote that article. And like she does, I probably would have stood by my choice. But my choice would have been made on misinformation, which is the other reason I’ve struggled with that article.

Misinformation about Down syndrome is pervasive, even in the medical community. And at this point in the game, as another advocate put it, the challenge is for women to be given the support necessary to continue the pregnancy when a child is diagnosed with an abnormality. Yes, pregnancy termination of any kind stirs up a lot of heated debate–I understand that. But I’m particularly passionate about terminating on the basis of disability because it seems to be more “ok” to terminate on those grounds. Hence why, in so many parts of the world, it’s ok to terminate a child with Down syndrome up to the point of delivery. DELIVERY. As women, we should be fighting that barbaric practice rather than hiding behind our fears and justifying the “choice.” As women, we should be outraged that we are counseled to deny our own flesh and blood because of gross inaccuracies about what life with Down syndrome is like. That makes my heart hurt. It makes me furious. It guts me because accepting it means accepting that society agrees, by and large, that my son’s life is less valuable than the lives of other “normal” children. That he is not as worthy of life.

And the scarier part? Most of society has no experience with kids like my son to have any business making that call. Think about it. I don’t want a podiatrist performing my open heart surgery. I don’t even want him to advise my surgeon because he likely has limited to no experience with cardiology. That’s why I share so much about our life, about my journey as the parent of a child with a disability. Because I don’t want the information to come from those with no experience. Those of us living this life day in and day out–-we should have the loudest voices. And our voices should be taken seriously. Other families should know what it’s really like to live this life-–not what everyone is afraid it’s like, but what it’s reallylike.

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As it turns out, the woman that wrote the article is running a half-marathon to raise money for the organization that supported her when she chose to terminate. She wants to open up dialogue about how, when given a poor prognosis, choosing to end your child’s life is the kind thing to do. She wants to normalize her choice.

When I heard this, I couldn’t help but laugh. This woman might be running a half-marathon, but I’m running a full marathon. This weekend. All 26.2 miles. I’m running this marathon–my first–as a Children’s Champion raising money for Nationwide Children’s Hospital in Columbus, Ohio. I’m raising money in honor of all the babies with a grim prognosis that survived because of the care they received at Nationwide Children’s. And I’m raising money in honor of the kids that didn’t survive, for whatever reason, but fought a good fight and passed on with dignity thanks to the care they received there. I’m a Cincinnati local, but our children’s hospital (one of the best in the world, I might add, and where my son’s life was saved) doesn’t have a marathon, so I chose the next best thing. I’m currently nursing an injury from the half-marathon I ran this past Saturday, but I will cross that finish line at the Columbus marathon if I have to hop on one leg!

At this point, it’s not just about running a marathon. No, now it’s symbolic. My running and fundraising efforts are a reflection of all that can go right when finding out your child has a disability. I want the world to know that this life–-this life with Down syndrome–-is nothing to fear. I registered for this event in July; I’m not raising money to compete with this other woman. But I will say this: when it comes to saving children and protecting vulnerable populations of people (like those with Down syndrome), I think I’ve got the more merciful perspective.

I’m running for life.

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To support my efforts as a Nationwide Children’s Hospital Children’s Champion, visit my personal fundraising page here.

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