Be patient and trust. I think those are the two things that you need, to do anything really. I just noticed this myself – lately I want everything done right then and there. “Why can’t you give me the results right away? Why does it have to be this way?” Stuff like that. But you have to be patient to get what you want. Like today, I was really anxious about getting results and they didn’t give us any. They’re like, “Well, maybe tomorrow.” So something you just don’t want to do is wait, but it’s something you have to learn – be patient and it will come to you.
Mother of Austin, 9
Take one minute at a time
Mom: Just take one minute at a time. I think that we were blessed to have a lot of support, and hopefully there’s other families that can find support in their church, their families, their friends, whatever. And even in the hospital – there’s the family center, there’s a lot of resources here at the hospital that we used, and then some that we didn’t need to use because we had such a good support system outside of the hospital.
Dad: And also I would say that you need to take some time for yourself when you can.
Mom: One thing that really helped me too, is when we first came to Boston, I didn’t know the city at all obviously, and I was afraid to leave the hospital and explore at all, and once we were here for a while and she was more stable and I felt more comfortable, I started to explore the city a little bit more, even just to find TGI Fridays a couple of blocks away. I would try to go for lunch, even if it was a late lunch or something, and take a book. I like to read, so that was kind of my get away, and I’d go and eat lunch by myself at one of the restaurants, and just sit there by myself and read while I ate and take a good hour or two for time to myself, usually around the time when Sophia was napping or I felt comfortable leaving her for a couple hours. And then walking – getting out and just walking and getting some fresh air.
Parents of Sophia, 4
Ask a lot of questions
When we started this, we didn’t know anyone who had had a transplant before. We weren’t aware of anything, we had no experience, no one to talk to. You know, you start going on the computer and Googling and you get all kinds of crazy things – some are good, some are bad, some are just off the wall.
Just trust your medical team, ask a lot of questions. They’ll answer every question for you. And learn! Learn as much as you can, but learn from the correct source. Learn from your team, read the meds and know what they’re for. And I think you become more comfortable and it’s easier once you know what you’re dealing with. And that’s how I get through it – I ask a lot of questions.
Mother of Noah, 5
When faith steps in
You have to take one thing at a time. We’ve learned that medicine is not black or white: what one family experiences isn’t necessarily what another family experiences, it’s very gray. So you just kind of take everything one step at a time, because what you might read on the Internet isn’t the same scenario, or your child may not react the same way as what you’re being presented with. And have confidence in those who take care of her, and that includes you.
[Later] I think the challenges obviously are the things you can’t control. I mean, you can do everything right and still have declining health. But I think that’s when faith steps in. We gave this whole thing with Laura to God a long time ago, and so far we’ve done pretty well.
Mother of Laura, 14
Give yourself a lot of grace
I guess the best thing to do is just to give yourself a lot of grace. Be honest with yourself and other people. Accept help when it’s offered, ask for help when it’s not offered because sometimes people just don’t know what to do, and really communicate your needs. Sometimes people say stupid things and do stupid things, and do them and yourself a favor and let them know when they’re doing that so you don’t continue to get hurt and they don’t continue to do things that are not helpful to you… I guess one of the things that was probably the hardest was sometimes when we were in our darkest, most dire circumstances with David, and people would call me just so upset with petty things in their lives and wanting to complain to me on the phone. And I would think, “Really? Do you know where I am right now?” And I’d have to remind myself that it’s all relative, and what’s a big thing to me is a big thing to me because of my experience, and what’s a big thing to somebody else is a big thing to them because of their experience, and I have to not just give myself grace , but give them grace also. But sometimes you just have to say, “You know what, I’m really tired tonight and I can’t talk to you anymore. I’m sorry that you are having problems. Really I am!”
Mother of David, 15