Lately the weather here in North Carolina has been – for lack of a better word – possessed. One weekend it’s snowing and the van is encased in ice, and then a few days later it’s 70 degrees. Go figure. I’m not complaining, though, I appreciate some really mild weather this time of year; after all, I grew up in Connecticut, where the snow can get waist-deep, so this is much appreciated. Anyways, we were recently taking advantage of a fairly nice evening outside with our fire pit. It was a little cool outside, so we had some light jackets on and made some hot cocoa and just hung out before putting the kids to bed. Grant loves the fire pit, referring to it as the “fire camp,” so he was excited to hear we were starting the fire. Of course, our kids’ attention span lasted a whole 42.7 seconds and they were off playing with toys in the back yard, which is just fine. At one point, Nolan was playing with a metal Tonka dump truck and was piling all sorts of stuff into the back: a football, a small skateboard, a bowling pin, a bucket. And it was cute seeing him lost in the world of play. My wife commented how “it’s nice to see him just doing little boy stuff.” And it’s true: you’ve been there too – where you look at your Heart Kid doing even the most “normal” things and you just appreciate it, because they’ve been through so very much.
As a dad, I live for all the moments and all the memories with my kids. Walking, first words, first days of school, piling on top of their poor old man:
School performances, Donuts with Dads, parent teacher conferences, etc. I live for it and I will do everything possible not to miss those moments. I’m so thankful for that chance.
Lately I’ve been really thinking about those types of moments and how fortunate I am to experience them. My job is really flexible in letting me attend school stuff or appointments and it means a lot to me and the kids, too. Even time at the park is a joy:
But as a Heart Dad I really want to acknowledge that there’s a tremendous amount of sacrifice that goes into the opportunity to make those moments happen.
Every single day – rain or shine, snow or sleet – there are a group of people who leave their homes while it’s still dark, or leave home while most people are just getting home from work, and they park their cars, ride an elevator, badge in on a time clock, wash their hands, and get to work. Some of them walk into the room where I’ve sat, sleepless and helpless with my son on a vent, and say, “Hi, I’ll be your son’s nurse today.” Some of them load up a cart of cleaning supplies and work hard to keep things clean and avoid the spread of germs. Some lug a ladder down the hall to replace a burned-out light bulb so a nurse can see better when he or she is charting. Some fire up the grill in the cafeteria to sling burgers and chicken sandwiches for hungry families and staff. Some scrub in for a grueling surgery in an effort to safe a kid’s life. Some land a helicopter on the roof, carrying a life that needs desperate help from the best team available. These are the hospital workers…and they sacrifice so much for us.
I really want to use this post to acknowledge all the hospital workers – clinicians and non-clinicians – who give so much so that we can enjoy so much. You have lives, you have families, and you have memories you want to make, too. I just want you all to know that it’s not lost on me that sometimes you sacrifice a school performance, a bedtime story, a goodnight kiss, a good push on the swings…all for my son, and to give us the chance to enjoy him. I know you put up with a lot: the demands, the long hours, the demands, the hours without peeing, the hours without eating, the sad stories. I see you, and I thank you. It’s your job, but I know your job comes with a steep price: you could do anything else in this world but you choose what you do, and I could never enjoy the memories I have without you.
So hospital workers – wherever you are, whatever you do – just know that you are loved, you are appreciated, and your sacrifices truly do pave the way for magical moments in a Heart Family’s life. Your work is not in vain, your work is priceless.
As I mentioned in a previous post, I did NOT have a good first experience with our initial cardiologist. So I was absolutely thrilled when she was unavailable and we had to see a different doctor for our second cardiology visit. The first thing he did was sit down and go over everything about Hypoplastic Left Heart Syndrome from the beginning…in simple terms. He said that Nolan’s heart was structured differently (what’s called a Double-Outlet Right Ventricle), which would be helpful for him. I was shocked, we never heard that in our first meeting with Dr. Doom (imagine that). He also said these words: “We have some of the best surgeons you’ll find for this…we know how to treat it, and we’re successful at it.” WHOA. What a turnaround! We went from Welcome to Depressionville, Population YOU….to HOPE! It was like suddenly we had a breath of fresh air, and I immediately felt more uplifted.
He had us do another fetal echo, and he came in the room multiple times to guide the tech towards things he wanted to see specifically. Afterward he met with us again to confirm everything and talk a little bit about future appointments. Then he personally walked us to check-out so we could make an appointment to meet with the surgeon who would be doing Nolan’s surgeries. Wow…that’s service. You know, I can’t say enough how much it meant to have a fresh view on things at this stage in our journey. The first doctor made it seem hopeless, the next doctor made us feel like they knew exactly what to do. And when your world has become so fragile, that’s big.
So I encourage you, find the doctor you like. Find someone who speaks at your level, not down to you. Chances are, wherever you are, there will be a few cardiologists available: try them all if you want. Seriously. You will be seeing this person A LOT. If they give you crap, you’re going to have to deal with their crap for a LONG time. So make it worthwhile for everyone. I encourage you to seek out other heart parents in your area and flat-out ask them who they like and why…I promise you they’ll be happy to tell you. It’s YOUR responsibility to ensure the best care for your kids…so do the legwork now.