Table 6.

Adaptation in the intrapersonal domain.

Adaptive Challenge	Adaptive Work	Parent Quotations
Increase Mental and Physical Stamina	Manage and Recognize Emotions	“… for a while, it didn’t seem like I had a child because she was in the hospital all the time, and they (healthcare providers) didn’t want me to hold her for a very long time.”
	Process and Accept Unknown	“I had gotten the holy water actually when we were pregnant, when we got the diagnosis … So it was kind of special to me. One time I had forgotten [the holy water], and I did the sign of the cross basically with my tears on her head. And I thought, God would understand that there’s nothing more holy than a mom’s tears.”
Face Complex, Changing Condition	Understand and Prepare	“I wasn’t able to bond with [my hospitalized daughter], even through the first three months. I was guarding my heart because there was so much unknown, and I just didn’t think I could really open up to her. So really, I think I was able to bond with her after her last [procedure]. It was almost like there was that relief like - she’s here to stay kind of thing.”
	Be on Alert to Monitor and Protect	“I was terrified—Terrified that he would die every day … I went for a long time being terrified. Long time. I would hardly let this kid out of the door.” “I think that’s been my biggest struggle - letting her do her own thing at her own time. I mean everybody’s different, and everybody learns different. That’s what I tell my [students] at school all the time. But I think I need to take my own advice. That’s easier said than done.”