Take a deep breath. I wish I would have taken a little bit more time for myself, even if it was just a couple of hours one day during the week. I wasn’t thinking about a pedicure or a massage, that was probably the last thing I wanted to do because of the guilt, but even just going to sit somewhere and taking a minute without anyone talking to you, the phone ringing constantly, just checking on the situation. I went through a period where I didn’t answer the phone, I would just let other people. But deep breaths and time for yourself, whether it’s the mom or the dad. Because it’s stressful, I’m not going to sugar coat it. It’s the most or one of the most difficult things you’ll have to endure in your life up until this point.
Knowing how resilient babies are also helps. They can handle it. I didn’t even know how to bathe them, and thinking how fragile they were and then watching the nurses bathe them and just realizing they’re a lot stronger than I thought—they need you, but they’re a lot stronger than you think. They’re resilient and they heal. It’ll get better. It does. I think you have to just go through it. That’s true with a lot of major things in your life. You’re completely capable. You’ll be surprised at what you can handle when you have to. For better or for worse, whatever happens, it’s going to be okay. I know that’s terrible to say—it’s not necessarily the outcome that you may want, but it is going to be okay. I don’t think I would have wanted to know all of the things that were going to happen. I think maybe just that it was going to be okay. He got better. And a lot of them do, that’s why you go to Boston.
– Lindsay, mother of Brian, age 2, Heterotaxy
I think you have to be very careful that you don’t lose sight of who you are as a person along the way. It can totally consume your life, and I think it did consume my life. For some time, all I focused on was his health and I would spend hours and hours researching things and getting worked up about stuff that probably was never going to happen, and getting really involved with other families who were going through similar things, but then when things weren’t going well for them, it doesn’t go well for you—you go through these emotional rollercoasters and it affects your friendships and your family and you can’t let that happen. Taking time for yourself and taking time for your spouse and your other children, and all of that is equally as important as being there for your child.
So trying to find the balance the best you can with researching, and advocating for your child and becoming a part of the community, if you like, but also not losing sight of your life and what’s important, and just enjoying the moments as a family and not letting it consume you, or let their diagnosis become who they are, because they’re not their diagnosis. I don’t ever want him to be defined by his illness.
– Amanda, Mother of Carson, age 5, Heterotaxy
The biggest thing that got us through all of this was our faith and the peace that comes with having that faith. I would tell families, “these kinds of stressful situations can break a marriage apart,” and I have told others, “whatever you do, cling to your spouse. Don’t let them separate you, because you need each other more now than you ever will need each other because it is such a hard journey.” I would give them the same advice that I was given in doing their research, because not everybody has the means to travel from the South to Boston and stay for indefinite times, and it’s hard financially, it’s hard if you’re apart, and that they need to do the research and to make the best decision that they can for their family, because every family is different.
– Donna, mother to Leah, age 10, HLHS
One of the big things they told us in the beginning—and we kind of adhered to it—you’ve got to carry on with your life. Luckily at the time, Grace had closed her business, so we could afford to have her stay at home and take care of Austin. Not everybody can do that. I could go to work, and I did, and I came home. That’s how we did it. Is it for everybody? I don’t know. Hopefully, everybody’s in sync like we were. We had a 14 year old, which her aunt could stay with her, which was good.
– Scott, father of Austin, age 10, TOF
You can’t let it rule your life. You have to be able to compartmentalize. I have to be able to put this on the back burner and forget about it sometimes, I have to because otherwise I’m not going to be any good to her. There are so many parents that I see on the support groups that are devastated by it. So it’s important for parents to realize that it’s okay not to think about it all the time, that that doesn’t mean they’re not being as protective as they need to. It’s okay to put it on the back burner, it’s okay to be a normal family once in a while and not think about it and not worry about it, and put things away and make the memories. Don’t make that a part of every memory.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker