My pediatrician always says, “Don’t worry alone.” I mean, you’re gonna worry, you just are. So seek out people. Seek out doctors, seek out friends, seek out friends of friends of friends who have been through this kind of thing. Whether it’s similar or different, whether it’s the simplest of procedures, to something more severe. I think every parent can relate to worrying about the health of their child. The one thing you want to do as a parent is make the world a happy healthy place and keep them healthy and safe. And to get this kind of diagnosis is devastating. But to be able to share that with people and relate to people—I had no idea how much strength I could get from people.
– Jessica, mother of Avery, age 2, ASD
I kept looking for another family like ours, because maybe if I found that other mom who was going through what we were going through, she would get it, and that’s the person I needed to find. But you know what? After three and a half years, I’ve never found another mom like that. But I do have a network of people who care about us and care about Zach- they may not necessarily understand what we go through, but I’ve learned to explain it. To get other people to understand you have to share what you’re going through, and don’t be afraid to open up in that way.
Even if people haven’t been through it themselves, they can help in ways that you don’t even know about until you ask for that help. You have to ask for that help and find a good network of support. It may not be what you have in your head for it to be like. You know, one of my closest friends is another mom with twins who are completely healthy and she’s never gone through anything like this in her life, but she’s the first person I call when I get a new diagnosis or something because she talks it out with me. So your support group doesn’t have to look the way you think it will.
Family has also been helpful once we figured out how they can help. I think the majority of our family wants to help, but they’re also scared and this is so unknown- we’ve never had a family member with a medical condition like Zach’s, let alone the developmental, physical, all the other things that come with it. So a lot of them have been scared to help. He’s G-Tube fed, so even something like helping us feed him through the G-Tube—we don’t have any family who’s like, “Okay, I’ll learn how to do it!” They’re all scared they’re going to pull it out or something is going to happen. So they’ve helped in other ways, some family that’s been able to have helped financially, which has been a big help, my mother-in-law has accompanied us twice up here for some of the longer surgeries. She’s come and stayed and helped take care of Wes.
Locally, we’ve found a community—a group of moms that I’ve met who have other kids with heart conditions or other conditions, cerebral palsy, things like that, things where we can relate to. To be honest, the thing that’s helped me the most with coping is therapy. And then the therapist that I was seeing was so inspired that she started a support group for other moms in our area, so her and I have kind of been working on that. Now there are eight moms who meet every two weeks, so that’s been really helpful too.
– Alice, mother of Zach, age 3, Single Ventricle
Having support groups is really helpful. We had people come and make some meals for us, and care for our family. Just getting help is really important. My mom was able to come and help too, when we brought her home. When I was pregnant I needed somebody to watch my other daughter while I had to get all those echoes, so just not hesitating to get a community of support around you. I think we still need it, and even when she was anxious about just having a routine appointment and we told some friends, the kids made her a card and threw some candy in a bag and brought it over. Just having other people who know what’s going on is just really helpful. And she knows that all these people love her and pray for her and it’s neat.
Even though she’s shy I think it’s great that she gets to have this story that she can tell people, when she chooses. She likes to do it when she’s in charge of the story, which is fine too. But we still need help, I’m not done with my parenting, I actually just bought a book on parenting teenagers, so I haven’t even got teenagers yet!
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
We made sure that our parents came in and sat in on some of the before surgery meetings with the doctors. We asked our parents not to ask questions or to communicate with the doctors, we would do that, but we felt that we didn’t know anything about the heart conditions, the surgery, the anatomy, that type of stuff, and it was hard and confusing for us. Even though we were talking to our parents, they really couldn’t grasp what was going on, and even to this day, I don’t think that they fully really understand the whole HLHS, but we felt that for us, that we were trying to tell the best we could for them, to understand by having them come in to these important meetings, to see where we were going with things, so we could have conversations with them afterwards, so that was important to us.
We were involved in a couple support groups—Little Hearts has a picnic every year. All the kids with HLHS and other congenital heart defects will come together, our family has always been good with supporting them and us. I think it was good for my family as well, because they see the children running around, playing in bounce houses, out in the kayaks, so as much as it helps us, it also helps our families to see, “oh , this heart defect doesn’t have to stop him or limit him with life.” Because I think just perceptions or things you may read may not be accurate on the internet for us or for the family, it can be really detrimental to your mental outlook on things.
I know at times when a family member says, “I read such and such about this on the internet” and I say, “OK, go back, where was that written?” You don’t think about that, it was written in like in 1982! So communicating with them the best we can has been very helpful. We’re very fortunate that we have a bigger family, a family that we all live within a couple towns right next to each other, so I know a lot of families don’t have that and it’s hard. We still live close to Boston, so when we were away, that we had access to them, and it was easy for them to come up if they wanted to or if we needed them to, so that was a big support for us.
Make sure you reach out to other parents. During Johnny’s first surgery, there was another child that was in surgery right before Johnny was going to be, but he was a surgery ahead of us. Having that conversation and keeping those connections, the positive relationships. I think picking those positive relationships as well. But as much as you could be a support to families, sometimes it could also be burdensome. They can bring you down and put some not so fabulous thoughts in your head about things. I think that was really important too, that there are people outside of your family who have been through the same experience. To try to make those connections. We did that through people that we met through the hospital, but also people that we met through Little Hearts.
– Abigail, mother of Johnny, age 9, HLHS
I’ve gotten very close with so many other heart moms. It’s just the biggest source of support. There’s a bond with these heart moms that just isn’t there with anybody else. But by the same token, there’s also moms I’ve gotten friendly with that they haven’t had good outcomes. So many times we used to say, “Austin’s had like 15 or 16 catheterizations, it’s just a cath, it’s not surgery, it’s just a cath.” But then one little boy had a complication with a cath and he ended up passing away. So handing Austin over for a cath every time became, “Oh my God, it’s not just a cath. So much can go wrong.”
Social media is a great thing—there’s a lot of groups, heart moms and different groups on Facebook that I’m a part of, and I’ve gotten friendly with moms that I’ve never met face to face, but again that bond, because we share the same type of journey. I read a book that said that trying to talk to somebody or explain to somebody the emotions and the whole process of handing your child over and going through all of this, it’s like going to the moon. It’s like you can come down and you can explain it all, but unless they’ve been there, and they’ve walked on the moon, they’re not going to totally grasp it. But with these heart moms, they do, they get it, they know, they know all these emotions. Austin’s doing great now and he is going to have at least one more surgery ahead of him, but even little things. Just if he gets a fever, I’m on high alert. It’s probably just a typical childhood virus like all kids are going to get, but I’ve called the ambulance more than once at two o’clock in the morning because he’s spiked a fever of 104. There’s a lot of comfort and a lot of support—I think that’s the number one thing, from the other heart moms and families that also travel down this same journey. This just is tough. As Austin gets older, or any of these kids that have gone through these things get older, you’re dealing with a whole new set of obstacles.
– Grace, mother of Austin, age 10, TOF
I’m on a couple of groups on the internet, there’s some cardiac arrest awareness groups, people who’ve survived a cardiac arrest and things, or their family members. I sometimes say there, “as parent of the child, the sick child, it is your responsibility but also your right to get whatever medical attention you see fit for that person. Gone are the days where we just sit and listen to a doctor and say, ‘Yes sir, yes sir’ Now we can question it. If you feel something inappropriate is happening to your child in the hospital, like not getting the correct treatment, speak up. Don’t be the person that just sits there and says, ‘Yes sir.’”
People said the best things to me. I’m not an overly religious person at all, but a person came up to me and said, “My priest is in Rome and having a meeting with the Pope, and they brought a picture of your daughter and asked the Pope to pray for her.” Which to me was, “Oh my God, thank you so much. Thank you so much for doing that. Thank you for thinking about her. Thank you for doing that.” People saying they’re thinking about your child—I’d rather somebody say the wrong thing to me than not say anything.
– Jim, father of Chloe, age 13, CPVT
I had friends, without even my knowing, do this whole meal plan thing. Every night, they delivered meals so my husband and kids had food while I was in the hospital with Gabriel which was really nice. I think the kids realized the importance of community because I didn’t have any family around to help.
– Louisa, mother of Gabriel, age 20, HLHS
We established a page on the CarePages website, it’s like a blog. For me, there was no way I could talk to everybody that wanted to know about James, and the only two people we talked with was the pediatrician that I’m very close friends with and then a cardiology friend from the military. So the CarePages was a real tie, because I could post something and then everybody would read it. For us, we come from a fairly small, rural area, and I have never felt the kind of support that I felt with that CarePage. For me, that was so cathartic. Now I go back and read it, and it still makes me cry. I have given other families access to it, I warned them though, it’s raw emotion, it’s what was happening at the time. And I said, “If you want to really see what this feels like from another person’s perspective, go read my CarePage. I had this kind of cocoon of people that were around us, even though they weren’t here. Plus it’s an easy way to let people know what’s going on, because you can’t possibly talk to everybody, you’re too emotionally drained at that point to talk to more than just your few closest friends. So, if people are into that kind of communication, for me it was extremely helpful. But I do also think because I’m so scientifically based, that I got a lot of support out of talking to people like Dr. Newburger, Dr. Emani, and reading some of the stuff they suggested. If I were non-medical, being able to talk to another parent who had gone through it would be extremely helpful. Because we felt like we were all alone, and I’m sure that’s what other people feel too.
– Melanie, mother of James, age 20, Anomalous Coronary Artery