When I Couldn't Find My Daughter With Truncus Arteriosus at a Swim Meet

February 7-14 is CHD Awareness Week — a week that rides on the coattails of Heart Month, Heart Awareness Month, Wear Red Week, CHD Awareness Month and many other names for February. February has become the month for everything heart-related, for obvious reasons. Thinking about this compelled me to write something in honor of our own heart warrior, our youngest daughter. But, what could I say exactly? When I spoke to my husband about it, we both agreed. Sometimes it’s the aftermath that sticks with us. Sometimes the residual, the leftovers, the stuff around the edges, is the part we still struggle with.

Like when this happened…

We were at a swim meet, which is not unusual. We had been to many meets before, more than I want to count. It can be challenging to keep a positive attitude while sweating out of every pore of your body. You have to learn how to sit next to water but not actually participate by getting in the water. It can do funny things to your brain. Just ask any swim parent.

In the past, I would chase down my kids and let’s be honest… hover… to make sure they were actually in the right place at the right time so they could achieve the glory of swimming in a 30-second race. Lately, they have both grown old enough to keep track of their own events. My daughters had earned the right of responsibility, and I had been lulled into a new sense of freedom. I let them go and do their thing, while I was suddenly free to do other things like volunteer to help organize the new timing system. It’s because I was volunteering that I was watching the meet so closely. It’s because I was volunteering that I ended up looking up at the blocks… and then down at my heat sheet… and then up at the blocks… and then down to my heat sheet… and then… with a sick feeling in the pit of my stomach, I realized what I saw written on the page did not match the swimmers lined up for the race. One swimmer was missing. My youngest daughter was missing.

The anxiety washed over me like a waterfall. I was frozen.

I had just seen her. It had been a mere matter of seconds since she told me how much she was excited about getting to swim in this race. It was totally unlike her to forget. She’s usually that swimmer who lines up at the blocks early. She’s usually anxiously awaiting her turn. So, where was she?

As the panic began to rise, the bile in my throat made me feel like I was going to puke. I couldn’t seem to suck in a full breath. Relax. Breathe. I told myself. Run through the possible scenarios.

If she had left the pool area she would have told me. She doesn’t wander, and she’s not the kind of kid who would run away. OK, move on.

If she had been taken, someone would have seen it happen. She was with her friends. They would have said something. OK, move on.

If she had gotten sick, someone would have noticed. Again, she was with her friends. They would have found me and told me. OK, move on.

So, where? Where was she?

After what seemed like forever, finally, I saw her. She was at the other end of the pool by the concession stand. She was with her friends. Laughing. Having fun. She had no idea what had happened. She had simply gotten distracted.

OK. Deep breath. It’s going to be OK.

Except it wasn’t OK. Not really. It’s never, ever completely OK.

That little girl is more than my daughter, more than my genetic reproduction. She’s my medical miracle. My heart warrior.

Every day that she wakes up and says good morning is one more day marked in the “I can’t believe she has made it this far” book. Every moment is another moment I almost wasn’t given. Every question she asks over and over, every time she rolls her eyes, and every time she gets sassy, is another moment I was never promised. Every hug, every kiss, every tear is a second chance to love the baby who almost wasn’t. I can’t think about it all. I can’t not think about it all. It makes life here in the “normal” difficult to process.

As a family, we’ve fought the war of survival. We’ve battled the anxiety and fear. We’ve earned our scars. On most days, we’ve already won. We fight. In that, we’ve already received our trophy. We’ve already been accepted into the club.

It can be invigorating. It can be exhausting.

Somewhere inside of all that invigorating exhaustion is exactly where I discovered that missing one race is not the same as missing her life.

She had missed the race, yes, but she was having fun. She had missed a race, yes, but she was also, finally, confident enough to explore on her own… without clinging to me. She had missed the race, yes, but she was happy, secure, and surrounded by friends. Who wouldn’t want that?

Sure, she made a mistake. She had even let the team down, but I didn’t need to scold her. Once she realized what had happened, she felt terrible. There was nothing I could say to her that she wasn’t already saying to herself. She’s the kind of kid who probably won’t ever do it again. At least not if she can help it.

Guess what? Kids make mistakes. Kids get distracted. Even medical miracles. In my anguish of fear and anxiety, I had forgotten to consider, maybe she had just screwed up. Maybe, she had just acted like an 11-year-old. Maybe, she was being “normal.” The crowd was so big, the meet was so chaotic, and my panic was so distracting that it kept me from seeing what was completely obvious. She was just a kid being a kid.

No matter what our particular situations may be, I think as moms we can all agree that anxiety and fear come with the territory. I think we all agree that our children are never far from our minds or our hearts. It’s more than a knee-jerk response. It’s like smelly leftovers from a meal you didn’t want in the first place. Something like garlic asparagus or kimchi. It’s the kind of gift that keeps on giving. But just because my panic is justified, earned even, it doesn’t make it healthy.

That day at the pool, it only took two minutes to find her. Only two minutes had passed between the panic and the relief. Two minutes that of course took another two months off my life. That’s the price I pay for being a mother. It’s also a small price to pay.

The weight of illness at times surrounds me, engulfs me, and brings me to my knees. Occasionally, especially once I have recovered from my mommy-induced panic, I can see that’s not necessarily a bad place to be. From down low, the best thing I can do for myself and for my heart warrior, is look up.

Betts Keating is the author of My Movie Memoir Screenplay Novel, a memoir and a movie screenplay all rolled into one book. She lives in the Charleston, SC, area with her husband two daughters, the youngest of which has truncus arteriosus.

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Thinkstock photo by j_photo