Dealing with the unknown and living in the now

When she was born and she had her first surgery and I remember through every surgery always thinking like, “There’s somebody somewhere that’s doing a study, or there’s somebody who’s making a change and we don’t even know about it yet, and what Isabelle has now, there may be so many other options years from now that somebody’s trying to develop.” Maybe because I’m a nurse and I believe in science and I still believe ten years from now they may be able to do something differently. But I don’t know if when she was first diagnosed I could have even thought like that. So when they were preparing to fix her heart with the pericardium, I just thought that that was the best treatment option then. Or when they said things were great with the bovine valve and I thought, “Oh, that’s great, but it didn’t quite work for Isabelle.” Then they did the Ross procedure, and that was super scary to me because now if she has problems, she has problems with two valves and not just one anymore, but that was the best option for right now. I think in the moment of each surgery, I did trust completely, blindly, that what they’re going to do is right that is what is best available and what is proven to work best and will be good for her.

I think you’re only as strong as you have to be, because I have to be for Isabelle and I would never let her see me become emotional. I’m very matter-of-fact around her about just living for right now and not thinking too far ahead. I felt like for a long time I kept thinking, “Oh no, what if her next appointment isn’t good?” And that was all consuming to me, it was very life consuming, it was really hard. Once I tried to stop doing that, and we’d come home from an appointment and good or bad or whatever—thankfully it’s been good—but I’m only living in right now with her and not looking too far ahead because looking too far ahead is just scary. It’s the unknown, and if you think about all the “What ifs” or what could happen, I think it makes it really hard to be happy right now. And Isabelle is happy and healthy and that’s what’s most important. So it’s hard to not always think ahead, plan ahead, and wonder what is next, but if you can do that—I think it has made a difference for us anyway in not feeling so nervous all the time.

 – Erica, mother of Isabelle, age 5, Anomalous Aortic Valve


Donna: If I could’ve known that she was going to be okay, then it would have made going through all of that okay. But at the time, we just don’t know how she’s going to come out the other side, it was always scary.

Nathan: The unexpected is the worst part. Not knowing.

Donna: Yeah, not knowing. And it’s such a complex defect. We’ve met a handful of people with the same diagnosis and everybody has had their own experiences and that makes this diagnosis even scarier. It’s just such a complex one with so many different possible outcomes.

 – Donna and Nathan, Mother and Father to Leah, age 10, HLHS


It’s hard—finding a way to take your fear about your child’s health and their future and acknowledge it, but put it in a place where you don’t dwell on it every day. That’s hard to do, and I think it’s harder to do when you’re in the midst of surgeries, it’s impossible before you finish that third surgery to do that. But that’s a challenge, and I’ve worked at that. I’ve worked really hard at it. As much as I don’t want Jake’s heart to define him, I don’t want his heart to define me either. I’m a heart mom, and I would call myself a heart mom, and I do a whole lot of advocacy for the heart association, and for Sisters by Heart, and I’m a big advocate for congenital heart disease awareness and policy change, but I don’t want that to be my definition. I don’t want to stick in that fear every single day. I have to go there sometimes, sometimes I have to, and it creeps up on you, but I try to sort of give it a place in my brain and in my heart where it’s there, and I’m aware of it, but I’m not visiting it every day.

 – Diane, mother of Jake, age 21, HLHS