Thank you, Crystal Klimavicz for your sweet words of encouragement!
http://mailchi.mp/e104dafe7fb2/author-betts-keating-170517
“Just parked in the garage, heading to lobby now,” I typed on my phone before I hit send.
“Do you know where the heart ward is?” came the reply.
“I think I can find it… 😉,” I sent back.
That may have been the biggest understatement I have ever typed. Asking me if I know where the heart ward is located is like asking me if I know how to breathe. I had been there so many times I could probably make it there blindfolded. Yes, I know where the heart ward is. I know it all too well. Just acknowledging that fact reminded me of my tender emotional “state.” Part of me couldn’t believe I was choosing to make this visit.
The mere act of driving into the parking garage had already seemed strange. For the first time in a long time, I was arriving at this hospital alone. Normally, I have my daughter with me. She’s the reason I come here, the reason I already know that the babies with special hearts all hang out on the heart floor. I had already glanced over to the passenger seat multiple times, only to find it empty. The emptiness of that seat felt unsettling, but was actually a good thing. Not to mention how amazing it is that my daughter has grown enough to sit up front – her age part of a miracle I find difficult to articulate. I couldn’t quite wrap my head, nor my emotions, around the fact that she was at school, where she should be, and not here with me at the hospital. Although it might sound strange, I was actually relieved she wasn’t with me. For once, I was not at the hospital for yet another procedure to maintain my daughter’s health. This time I came because I had another motive. Today, I came to meet Noah (see photo below).
Amazingly enough, Noah is the first baby I have met, in person, who has exactly the same kind of congenital heart defect as my daughter. That’s because they both have an unusually rare form of CHD. It’s called Truncus Arteriosus. Yes, it’s a bit of a mouthful. It’s equally hard to say as it is to understand, even for those of us who deal with it. As my daughter often says, “Will I ever meet someone just like me?” Chances are not often. Chances are, almost never. That’s what made today so special. And that’s why, against all odds, I was going back to the heart ward, voluntarily.
As I entered the garage elevator, I paused to take a breath. It never ceases to surprise me how much a trip to the hospital affects me. Just when I think I have it all together, I quickly find that I don’t. I have to “adjust” every single time I walk into this building. I have to remind myself again that I can get through this. I can stop my heart from racing, dry my sweaty palms, and focus my eyes enough to see clearly which number I need to press to make the elevator start moving. I can, I just don’t always want to. Today I needed to, because today was about Noah and not about me.
By the time I had navigated through the maze of hallways and ridden a second elevator to the correct floor of the hospital, I had gathered myself enough to walk down the hall toward the heart ward. Or at least I thought I had. That all changed the moment I pushed the buzzer for admittance and waited while I watched the painstakingly slow, double doors open. Each excruciating second that passed felt like an hour. Perhaps that was a good thing. It gave me yet another attempt at composure, a moment to think.
Five years ago was the last time I walked down these halls. Like I said before, my daughter and I had come back to this hospital for multiple procedures, but the only reason we would ever come to this particular floor was after something big that required a long stay. I was so grateful to realize it had been five years since my daughter had endured anything that involved. I rested inside another huge sigh of relief… and then continued to wait for the doors to finally grant me admittance.
When the heart ward finally came into full view, I was struck by the fact that while everything before me had subtly changed it had, at the same time, stayed exactly the same. The doorknobs were the same. The handrail was still in the same place. The windows still looked out at the same vista. The floor had the same tile. Everything looked just like I had left it five years ago except for the walls. They had that fresh, newly painted look to them. Unfortunately, the fresh paint couldn’t cover up the smell. The smell that will always be indefinably the same. It’s the smell of longevity and endurance and it is unique to those floors in a hospital that hold on to their patients. After my daughter’s first heart surgery she was in a ward like this for 8 weeks. Some get released after only five days. Some stay even longer.
The nurses at the station in the middle of the floor had different faces, but thankfully still wore familiar scrubs. In a way, it was comforting the scrubs at least had stayed the same. It brought recognition to strangers.
“Can I help you?” one of the nurses asked.
“Room 421?” I answered, pretending that I didn’t know which way to go. Rather than stumble my way through a monologue of reasons why I already knew where the room was located, I decided to play dumb.
“That way,” she answered and pointed down the hall.
I walked in the direction she had pointed, but I struggled to make my feet move. I was stuck in an internal, emotional debate over where I was and where I should be. I wanted to be comfortable being in this hallway, but I wasn’t. I wanted to keep my former experience separate from this moment, but I couldn’t. I wanted to put it all behind me so I could be supportive for someone else, but it was difficult. More difficult than I expected. Unfortunately, it was too late to change my mind. Even my slowly moving legs had propelled me forward enough to make it to the correct door. It was time.
As I walked into the room, the memories crashed over me in a flood of flashbacks. I was transported back to a time that seemed like only yesterday. I remembered everything. I had been here before. I had been in a room just like this before. This room designed to fit a crib, a couch that folds into what some would like to call a bed, a reclining chair, a sink, a small closet, and more medical equipment than should be allowed in the same room with a patient so tiny. It was all out of balance and it temporarily threw me off my purpose.
Then, I saw Noah.
And I remembered why I was there.
It was like the clouds parted and a ray of sun burst through. This was it. This was the moment. The moment that would make everything I had been through, everything my daughter has survived… worth it. This was my chance to move beyond the pain, and the fear, and the desperate sense of tragedy. I was here today to give hope to the people in this room, all the people in this room, including me.
After all, we have a lot to be hopeful about. We have babies who know how to go from this:
To this:
And even beyond to babies who are now old enough to sit in the front seat.
I found connection with three people who needed no introduction to our story, we already had an instant camaraderie. That camaraderie gave me a sense of clarity and strength. A sweet breath of restoration that I didn’t predict. An unexpected gift I could give and receive at the same time.
No matter what comes next, and there will be plenty of “nexts” to come for all of us, together we could know and understand that our heart warriors are strong in a way that is impossible to define. Together, we could hope in their future and in the success of their fight. Together we could trust that we can do this. It’s possible. Not easy, but possible.
I was able to say all of that just by saying, “Hi.”
It was an honor. A privilege.
I’m glad I didn’t miss it.
Read more of Betts Keating’s story in her memoir, My Movie Memoir Screenplay Novel, available for purchase at amazon.com.
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My blog post was picked up and featured on TheMighty.com. Check it out here: https://themighty.com/2017/04/parenting-tween-truncus-arteriosus/
This week 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 left-overs, 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 that 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 paralyzed.
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. Okay, move on.
If she had been taken, someone would have seen it happen. She was with her friends. They would have said something. Okay, 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. Okay, 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.
Okay. Deep breath. It’s going to be okay.
Except that it wasn’t okay. Not really. It’s never, ever completely okay.
That little girl is more than my daughter, more than my genetic reproduction. She’s my medical miracle. My heart warrior.
Everyday 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 she drives me crazy is another moment that 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 that almost wasn’t. I could lose my mind if I think about it all. I could lose my mind trying not to 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 chose to fight rather than give up. 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 eleven-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 left-overs 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 her mother. It’s also a small price to pay.
The weight of her 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.
Read more of Betts Keating’s story in her memoir, My Movie Memoir Screenplay Novel, available for purchase at amazon.com.
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“A Beautiful, “Disjointed”, Journey through Motherhood ~ An Interview with Author Betts Keating”. Here is the website link: http://www.getoutmama.com/get-out-mama/bettskeating/
In case you missed it, I am the mother of a heart warrior. What does that mean? It means that my daughter lives with a permanent, rare, extremely serious heart condition. It means that she will continue to battle against this condition, every day, for the rest of her life. It can be daunting, but as usual, my heart warrior has a way of putting things in perspective.
Like last weekend.
I have a little girl (same one) who loves the Strawberry Festival that comes to this area every year in the spring. She talks about it from the day after she attends until the day she gets to go again. She saves up her money. She arranges her schedule. She makes endless plans. I am at a loss for words when it comes to describing how much attending this festival means to her. I might call her borderline obsessed, but she’s not really. She just loves how carefree she feels when she is there.
The Strawberry Festival is not something that I particularly enjoy. I do, however, love a good amusement park. I’m a big fan of the rides that involve some form of free-fall. I have been known to enjoy a roller coaster or two. I even like the rides where you get doused with a wave of water at the end. Unfortunately, I don’t feel the same about the smaller, slightly more grungy forms of park amusement. To be honest, just thinking about them makes my skin crawl a little.
Not true for my heart warrior. She soaks up every minute.
I worry about her enough as it is. Do I really need to think about all the things she could come into contact with at a fair? Do I really need to worry about how her heart handles all that excitement? Shouldn’t I put my foot down and tell her not to go?
No, I shouldn’t. And here’s why.
Because she’s the one that taught me that even when your life is lived on the edge of death, you don’t have to afraid to live. You can embrace every moment of the life given back to you. You can still have fun.
I could try to describe this more. I could try to explain it better. But thankfully, I have a photo that says it all. A picture really is worth a thousand words.
Enough said.
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Read more of Betts Keating’s story in her memoir, My Movie Memoir Screenplay Novel, available for purchase at amazon.com.
Click the FOLLOW button to follow this blog.
Betts Keating 