TABLE 2.

Meaning-Making Domains, Themes, Subthemes, and Representative Quotes

Domains, Themes, and Subthemes	Quotes
Comprehension: A person’s understanding of who they are, what the world is like, and how they fit into it
Personal understanding
Appreciating life’s moments	• There has been a bit of a gift in all of it because I don’t take for granted the moments that are good and the simple things, like [my child] holding his head up, or being able to use one of his hands again. It was tiny moments ... even if it’s just us being together. (Parent 6) • [Our experiences have changed] our zest for life or perspective on life. ... Now I see it as a much more delicate thing that’s not to be taken for granted, because it can change in a moment’s time. (Parent 4) • There is going to be a collective wound when we end up losing her, and I hope that we’ve done a good job working through the emotional pieces of that with our kids anticipat[ing] and just embracing every d and every moment with her. (Parent 3)
Accepting what’s uncontrollable	• It just is what it is, and that’s it. Sometimes, you have to rest in that and then keep moving. Sometimes, you have to dismiss how differently your life is, because reflecting on it too much isn’t really going to answer very many questions. (Parent 11) • None of us chose this life, but we can make the best with what we’ve got and help other families do the same. (Parent 6) • I can’t predict, nor can I control everything, and that’s a big thing for me. … I’ve learned that I don’t always get a say in what happens. (Parent 14)
Acknowledging adaptability and growth	• I was heading into my 30s by the time that [he] was diagnosed, and it flipped our lives upside down. I’ve learned more than I ever want[ed] to know about medical stuff. (Parent 6) • What we’ve learned also is we know how to do a whole bunch of medical things, which is very interesting. (Parent 12) • You know, she was born with her condition, which led [to] her [being] in a wheelchair, but we functioned well as a family. We integrated [within] our community as a family, and [our daughter] participated in school activities as an individual. (Parent 4)
Understanding of other people and the world
Seeing uniqueness and value in all people	• What I’ve learned by being [child’s] parent is that all people have value; that everyone has a purpose and a reason for being on the earth. (Parent 14) • I’ve learned from my son is how full of a life people with neuro things have, as full as anyone else’s. (Parent 15) • Our main focus [is] keeping [our child] well, but we want them to be seen, known. … Not necessarily with the medical things, but just as a human. (Parent 14)
Witnessing my child’s impact	• [Our child] always had a way of really attracting people to him. People have always really liked him. … wanting people to see that he’s not just special to our family; he’s special to other people, too, and when he’s healthy, people are excited and happy. When he’s not, his absence is felt, too. (Parent 11) • Any little thing that she does, or any type of interaction that she has with the staff, it warms hearts. I find that holistically, across the board … she warms the hearts of even the tough and crispy staff. … She’s gotten under their armor and they’re very [glad] to see her and they get a smile from her. Then, it’s a big d in their lives, too. (Parent 3) • [Our child] makes everyone … a little calmer. He’s very relaxing and fun, and makes you enjoy things differently than you did before him. (Parent 12)
Purpose: A person’s discernment of, commitment to, and engagement in their personally meaningful goals
Personal change
Being responsible and accountable	• I learned that there’s many doctors that come and go, and that I have to really advocate for her, ‘cause I am the one who knows her more. I think the first time I got into the hospital, I really was not sure what to say. I was very intimidated on what I could and could not say, but the more that I’m here at the hospital, the more that I know that I can say a lot more for her and advocate for her, and I have to really be like, ‘No, this is what she has to do,’ or ‘This is what has worked in the past.’ (Parent 9) • Before she was even born, it was all-consuming, because I was in the hospital for 2 wk trying to keep her in my belly, and then once she came, she went straight to the NICU and had lots of complications, and then just ever since then, she’s beyond anything I could’ve imagined, both in challenges and amazingness. … But I also have my d where I’m just beyond tired and I need time. It’s a lot, but she’s amazing and been my whole life. (Parent 1)
Implementing my skills	• We can nurse him back up from his sick settings to baseline, ‘cause he’s a slow mover. We understand him and his needs, and [his doctor] looked at him and said, ‘cause he knows us and what we’re comfortable with, was able to tell us, ‘You know we would trust you because of your experience and how we see you take care of him to take him home before he’s out of the sick area,’ if we wanted to, and that was really good for us to hear. (Parent 15) • [The clinician’s said] ‘Okay, if you feel like you can handle her care, knowing that she needs suctioning every so often and an inhaler every 4 h all throughout the d and night, it’s up to you. If you feel comfortable, then, yeah, we’ll approve it and let you go home.’ And that … they at least trusted that I was able to complete the return to baseline in a home environment, which was nice. (Parent 3)
Learning patience and how to be a better person	• I think it really has just humbled me and taught me to be patient and be a better person in general and not be so short with people. It’s really opened my eyes to a lot of things. (Parent 8) • This is the only parenthood I know, so I don’t know that I’ve changed as a parent, ‘cause she’s always had health concerns and she was born with these health concerns. … Definitely changed me as a person. I think it’s definitely made me a little more fierce, a lot smarter in a lot of ways, a lot stronger in a lot of ways. (Parent 1) • I’ve said so many times, [child] has taught us so much about just normal life things, without ever uttering a word. Just resilience and acceptance and love. (Parent 14)
Changes in other people and the world
Centering my family	• It’s completely changed the way I think about life and my kids, and pretty much we just live and breathe our children. Every decision we make is revolved around them and what’s best for them and their quality of life. (Parent 6) • I like to say that my kids are super-spoiled. They have a weight that they carry with all of the stuff that we have them help us with with [our child], and so a little spoiling to try and maybe balance out. (Parent 3)
Being a teacher	• That’s all I can do and just keep going, at the end of the d, ‘cause that’s all that matters, is that I’m educating people on things that they don’t know. (Parent 8) • The team often defers to me as the expert on [my child]. … They’re the medical people and I’m the expert [on my child]. I’m not pretending like I know all the things about all the things, but I do know her and what works and what’s worked past and how she manages sickness. (Parent 3)