Adam: The littlest thing, we celebrate. When Zach took his first real steps, we were at Build-A-Bear, and he was pulling a pug on roller skates, and all of a sudden Alice just starts screaming at the top of her lungs in the middle of the store, and everyone’s looking at us like we’re complete crazy people. But it’s just—you take it one day at a time, and start fresh the next day, and just enjoy life and enjoy everything because you never know when something’s going to happen or you’re going to be in the hospital again or something. Just always enjoy everything.
Alice: Yeah, we have a quote on our wall back home that says, “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.” That’s our mantra.
– Alice and Adam, parents of Zach, age 3, Single Ventricle
Hopefully Carson will inspire people that maybe get that one in a million chance of living with the diagnosis and see that sometimes things actually do go okay. I think our cardiologist had said once—which really stuck with me—she said, “Carson is the reason why you don’t look at statistics.” And I really think that that’s a very powerful thing. I would add that every case is different, and that you can’t get caught up in what happens to other kids, because your child is going to have their own story, and they’re going to make their own path, and it has nothing to do with other kids’ stories and other kids’ paths. And for you to just have faith, and do everything you can, and it’s kind of out of your hands.
– Amanda, Mother of Carson, age 5, Heterotaxy
Be gentle with yourselves and with each other. This journey is hard. It’s a marathon with a moving finish line. Give yourself, your partner, and other children grace. Live in the moment. Have fun. Each moment is really a gift. It’s not just a cliché, it’s the truth. Focus on making memories together. Don’t focus on when we get to this point or that point. Live in the here and now.
– Nicole, mother of Levi, age 7, HLHS
One thing that I really have loved about this is that it has turned out to be a great joy for our family. We view people that have struggles differently, I think we can enter in. And I think Alexandra really has a compassionate heart because of this. I love that she was able to care for another little boy who needed a pacemaker. I would just say at the beginning it’s very intense, but I think over the years you should be able to look back and say, “What can my family do differently because of this, and how that is a benefit?” And it might even be that you get to go through security with the TSA agent while all the other people are in line. You can look at them and be like, “Look at you suckers!” I know that’s silly, but I do think there’s ways that you make it neat. I think over time you should be able to see there’s some really cool things. And I like that Alexandra has a story, and because of this opportunity to tell it, that’s a great opportunity for an eight year old. To develop courage and say, “This is my story.” Be patient with yourself is what I would say. Be patient with yourself.
– Kate, mother of Alexandra, age 8, Pacemaker
It’s a scary condition, and it’s scary for kids to have it. I know when my daughter first got out of the hospital, she had a really hard time being at home. While she was in the hospital, my mom, who had been at the Brigham, passed away from the same condition. We didn’t tell Raegan while she was in the hospital because we needed her to focus on healing, but once she got home we told her and I think that really scared her because they spent so much time together. So had a really hard time with it for a while–she didn’t want to go to sleep, she didn’t want to be alone, it can be a very scary thing. But I think you just need to own it. You just need to look at it, see it for being what it is, not inflate it into something bigger, and do your best to just make it one part of your life. As scary as it can be, you can’t let the fear rule your life.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker
I guess it’s just one of life’s curve balls. People get curve balls in different ways. Somebody loses a job, or loses a parent young—you got to go with the flow. And then, there’s that expression “God doesn’t give you what you can’t handle.” Well, I would argue with that sometimes. But just be willing to reach out if you’re having a hard time. Our team has provided some wonderful resources and at least suggestions for things that would help.
– Louisa, mother of Gabriel, age 20, HLHS
There’s no greater reward–when Jake graduated high school, or when Jake ran a quarter mile on the track, or when Jake was carrying the banner for his brother’s baseball team when he was little, there’s nothing greater than the reward on the other end. Diane and I were saying, “Boy, we would love to have a few more dollars in the bank, and we would like to live in a bigger house,” but none of that matters as much as just getting these kids through.
So understand it takes forever. The kids are way stronger than we are. I believe that I couldn’t do it, I’d have just said, “I’m done.” There was a point when they crack the chest, they leave the incision open so that it doesn’t get infected, they just cover it, and Jake was just a baby and I was thinking, “How strong is this kid? I couldn’t do it.”
The other thing is reach out. Sometimes you don’t need to say anything to another parent, you just have to stand next to them, and that’s all it takes. I find that that’s all you need to do, just stand there next to them and just answer what they want or not talk, but this disease is certainly not a death sentence. It wasn’t for my son 21 years ago, and it isn’t today, that’s for sure. So talk to people. We could never give back enough, quite frankly, for the reward we have. That sounds corny, and maybe it is, but I don’t care.
– Bill, father of Jake, age 21, HLHS
It’s interesting to go back and think about all this. For me, it’s knowing what I know now, which is that you get through all of this. At the time, it’s kind of overwhelming and I think one of the things that helped us and would help other families is just knowing as much as you can about the process. I wish I had better expectations—the surprises that we had about future surgeries could have been figured out a little bit sooner or told to us a little bit sooner. But I think the way that we’ve coped with all this is just by getting as much information as possible, and talking to as many people as possible and among ourselves, and facing the thing straight up as a problem that needs to be fixed with the fundamental idea that it can be okay, that it’s going to be alright.
– Richard, father of David, age 23, TOF