My friends, this is a challenging post because it’s something I’ve struggled with from time to time and something I’ve seen/heard from others, too (not to judge).
I remember the day pretty clearly: someone I worked with at the time came into my office to talk something work-related. As I was looking up what she needed, she asked how everything was going at home with Nolan. I was a bit taken aback at first, because we were months into this incredibly difficult journey and it was the first time she’d ever asked about him. At this point in his life, it was a STRUGGLE: he was on a feeding tube, vomiting consistently throughout the day, and we were up all hours of the night giving meds and trying to sort out the obnoxiously-beeping feeding pump. I wasn’t sleeping, I was fried, and it took everything in my power just to get to work, much less complete my tasks. Of course, I didn’t go into all that, I just talked about appointments, feeds, meds, therapies, etc. Then she said something along the lines of, “It just reminds me of when I had to take my daughter back to the hospital for a few days for jaundice and I just couldn’t handle it,” and then she started to cry. Outwardly I remained passive. My brain, however, was like:
The nerve! THE NERVE! To quote the Grinch, “The unmitigated GAUL!” I was flooded with this sense of anger, like “How dare she compare jaundice to what my son has been through! His chest was OPEN…he was on a VENT…at one point he CODED, for god’s sake! And you’re CRYING?!”
Since then, I’ve realized that this tends to happen to me a lot…”you don’t know what tired is, bruh” or “that’s not scary, this is scary.” It’s like I have some sort of measuring stick that I use to compare people’s struggles against mine, and I also determine whether those are valid or not. It’s like a contest in which I win because my struggles are worse than yours. Yikes. That’s not cool, to be honest. Do you do it, too?
Now before I go on, I need to establish that this doesn’t make you some kind of failed or broken person. In fact, I’ve found that these feelings are at their height when I’m feeling compassion fatigue (read more on Compassion Fatigue here.)
But I also need to say this here, and say it loud: our struggles/traumas/challenges are not a contest! Because if it were a contest, what do you win? Is there some prize? No, because guess what – your struggle is still there. And when you dig deeper, there will almost always be someone with an even worse situation than you. Ok so open-heart surgeries are way more difficult than some jaundice…but what about the kids coming home in wheelchairs? Or with a trach? Or what about the families who lost their child? When I think of it that way, I feel terrible….because while I’m raining down the my-trauma-is-worse-than-yours attitude on others, I realize that others can do that do me…and if they did, how would that make me feel? Pretty lousy.
So what then?
Friends, I feel like the power we have over this kind of thinking is to use empathy. I write a lot about empathy because I think it’s critical to changing the world and helping our own mental health in the process (you can read more about it here). Oftentimes empathy gets confused with sympathy, but they’re different. Sympathy is that natural feeling you get when you see someone struggle or you hear some sad news. That’s the response we get from people when they hear how difficult our journey is…but it’s also the source of this “contest” we tend to hold with others we deem as not struggling as much as us. We want sympathy, but won’t give it. So why empathy, then? Empathy is understanding what someone is going through because you’ve been through it, or simply putting yourself in someone’s shoes to understand.
You see, we want people to do this for us, but why won’t we do it for others? Think about when you found out about your kid’s CHD: if you’re like me, you knew NOTHING about CHDs before that…it was the furthest thing from your mind. Your struggles, up to that point, were the most difficult things for you. And now that you’re climbing a different mountain, we sometimes don’t want to extend the same grace to the people who were in the same spot as us. So before I judge, maybe I need to stop and empathize with that person and realize that while our experiences aren’t exactly the same, I shouldn’t invalidate their stress over their struggles. Rather I need to recognize that I’ve been there, too, and I should seek to understand. I need to do better about saying things like, “Wow that sounds really difficult and it’s scary when are kids go through tough times, right?” Give it a try and see how that feels, I know I will.
The life we lead is challenging, there’s no doubt about it. But it’s also not a contest. When you’re stressed, scared, tired, at the end of your rope, don’t lash out at people even though it may temporarily feel good to do so. Rather, practice some empathy and work towards building a community of people who care for each other, no matter what you’re going through.
I’m sure before you had a child that was born with a critical illness, you knew of your local Children’s Hospital, but you didn’t really know about it. You’ve probably said to yourself, “I’m glad we have it, I just hope we never have to use it.” For you that wish didn’t come true and ushered in a reality that you never expected.
Like all of us, you’ve made many trips to and from these hospitals and walked through the same set of doors over and over: rain or shine, sleet or snow, holiday or humdrum Wednesday. As we left our – hopefully – last surgery with Nolan, I started to really think on the significance of the front door of the hospital.
The Door can lead to our greatest fears, but also our greatest hope. There have been way too many times where I’ve had to walk from the parking garage to these doors, and every step closer makes me more scared and more nervous. Because on the other side of The Door is something scary for my son, something unknown, something painful, but something necessary. But also on the other side of those doors is a team of people who have the professional training to give your kid a shot at a full life. This door also leads the way back home…it says “we made it.” The Door leads to thanksgiving…to joy…to peace.
The Door also leads to suffering. And before you think I’m getting too heavy, just let me say that I believe we don’t talk about suffering enough when it comes to healthcare. Because it makes us uncomfortable and carries a negative connotation. But like it or not, this is the reality of what occurs every single day at a hospital: innocent kids given a diagnosis they don’t deserve, losing time on a childhood that should be free of pain and fear. There are parents who walk through those doors everyday consumed with thoughts like: is he going to make it? How am I going to pay for this? How long? How much more can I do? What about work? And on and on and on. They suffer, too.
Healthcare workers: you have such a power within your hands to impact suffering. Sure, if my son hurts you give him something for it. If I’m cold, you give me a blanket. That’s what’s considered inherent suffering. It’s tied to the thing we’re here for. But what else? There’s another type of suffering called avoidable suffering and preventing/reducing this takes a lot of effort and isn’t something you learned in school. What does this look like? It’s the worker(s) that walk past the lost parents in the hallway, because “I’m too busy right now.” It’s the worker that doesn’t make eye contact. It’s the one who talks down to people. It’s the one who won’t realize that the hospital isn’t quite home for a sick kid, and won’t go beyond the scope of their job description to make that better. It’s the worker who operates off of a checklist instead of a heartbeat. It’s the one who sees a parent as “pushy” or “snappy” without realizing that we…are…suffering. Once you realize that and try to put yourself in our shoes, it will drastically change the way healthcare is delivered. Because human connection and empathy are a powerful way to help heal. I know you didn’t get into healthcare for checklists, productivity reports, and to spend half the day scouring the building for the last working med pump. When you empathize and see suffering for what it is, you will reconnect with the reason you got into this business.
What about those who walk back out the doors and re-enter their lives? To friends and family: you play a crucial part in alleviating suffering, too! Please realize that while the surgery was a success, and the prognosis is good, we’re going back into a world that’s forever changed. There might be medications to give, multiple appointments, tube feeds, endless stops at the pharmacy, loss of work, increase in stress, and a new schedule that basically says we can’t hang out like we used to. We want nothing more than to go back to that, but this is our new reality. And it’s really, really hard sometimes. And we need you. Don’t stop inviting us to stuff: one day we’ll surprise you and say yes. Don’t stop asking how you can help, even if you don’t know what you’re doing. Realize that while we might wear a smile, it’s not always that way in our minds. We’re always going to worry about the future, that’s just how it is. So text your friend, send a card, cook them a meal…just let them know they’re loved. And try to understand what it would be like for you if the rug was suddenly pulled out from under you and you’re left to put it back together. And I also can’t let this paragraph end without saying that unfortunately there are people who walk through The Door empty-handed forever. I cannot imagine the pain these families face. Please be there with love and patience and kindness. If it was you, you’d want the same.
The Door is a place of great heaviness, but there are things we can all do for those who are currently standing at The Door. If we realize they have fears and are suffering, we can surely do things – through compassion and empathy – to give them the power of hope and joy. They can walk into the hospital knowing they’ll be treated like family. And they’ll walk out knowing they are truly loved.
A little while back I wrote an entry about self-care that included things like aromatherapy, healing touch, breathing, getting a hobby, etc. Since then, I feel like I’ve stumbled upon something that should’ve landed on that list, had I known about it at the time.
We can all agree that it’s very important for Heart Parents – and anyone really – to practice kindness, empathy, and compassion towards others, right? These are all very important things to do so that we can make the world a better place. The reality, though, is that sometimes kindness, empathy, and compassion can seem a little finite. If you picture it like a gas tank in your body, over time you’ll end up on E and all burned out. But if you work on keeping that tank full, you don’t have to worry so much about that burnout.
This begins with you. It’s not about loving harder or giving more hugs or high-fives. It’s not about digging deeper for more empathy. It’s about taking a long, hard look in the mirror and realizing that often the person that needs kindness from you is….you. You see, there’s only so much of yourself you can give before you have nothing left, no matter how helpful you want to be. And when that happens, you will pay the price physically and mentally.
A little while back I was able to learn a little bit about this concept of compassion fatigue, which is a by-product of being compassionate. It doesn’t make you weird, it just means you are actually compassionate, but you’ve work it out like a muscle that you exercise too hard. You need to rest, you need to recuperate to get that strength back. One of the biggest things I’ve taken away from this is that it’s important for us – whether you are a Heart Parent, a nurse, a doctor, etc. – to practice kindness towards ourselves. So many of us give but never give to ourselves. So what does this all mean?
Try to do something nice for yourself…maybe not everyday, but every few days. I’m not saying you need to run off to the beach or buy a sports care on the reg (but if you do go to the beach, bring me along yes?). These kind acts are simpler: getting outside for some fresh air, going for a bike ride, doing something that makes you smile or laugh. Take a moment of your day to re-fill your compassion reserves. For me, my nice thing that I do for myself is coffee. When it comes to coffee, I’m a little like this:
I love my coffee…a lot. I’m not the person who drinks excessive amounts of it, just 1 or 2 cups a day really…but everyone who knows me knows it’s like my one big vice (if you could even call it that…I mean, c’mon son). Anyhow, what I started doing some nights is once I put all the kids to bed, I come downstairs and make myself a cup of coffee. Just one. Then I sit on the couch and I drink my coffee and I just…exist. Sometimes I watch a baseball game, sometimes I stare off into space, sometimes I look for funny memes online, sometimes I have deep thoughts (“I swear DJ Snake’s new song is just a slowed-down version of his last one”). It doesn’t matter what I have to accomplish before the night is done, it doesn’t matter how badly the kids have utterly destroyed our house, doesn’t matter how high the pile of dishes are. For those few moments I give myself the gift of coffee and the chance to be and the chance to breathe. It doesn’t take long, but I find it to be an incredibly powerful and centering moment. I usually feel quite refreshed and energized and I finish all the things I need to do that evening. I find myself sometimes really looking forward to my small moment with coffee. Like if I am wiped out from a busy day at work or my kids are being absolute hellions…it’s as if I say to myself, “I just need to get to the coffee.”
This doesn’t cost me a ton of money, it doesn’t take a lot of effort, and it’s not hard to do. What is challenging is finding that way to be kind to yourself. This is also not selfishness…it’s survival. Don’t let your kindness be something that pulls you away from your family or your work or other responsibilities (“The HLHS Dad said to be nice to myself, so I’m quitting my job and moving to Palau for 6 months!” NO.). Find those small things that just make you happy, then find ways to use them to rejuvenate your mind, body, and spirit. You’re going to find that this is keeping you from absolutely losing your mind.
So today, going forward, I want you to never forget the man in the mirror: be kind to him as he is kind to others.