TABLE 3.

Sensemaking quotes

Factors	Examples
Fear and uncertainty	“…the light’s out (Figure 2A) because it’s like there isn’t anything, nobody really guides you…there’s nothing, like when I’m in school there won’t be anything that will guide you if you have a kidney transplant. “ (T5)
	“Or he has, maybe diarrhea, or he has constipation, things like that, then I want to make sure that it’s not the kidney…We always worry about that, we always worry that, God forbid, maybe… You know, rejection.”—P4
	Yeah it was an experience in growth and learning where I really learned okay, how rare is this? Where does it come from? What is it like for other people who have it? It’s pretty rare. Just learning a lot about some of the potential symptoms and some things I may be likely to have because I have this and it was a lot of learning and specifically about a disease I have in my genetics and I really enjoyed that in science with learning about it.—T8
	He hasn’t missed [his medications yet]. Once he went to the movie, he was 10 minutes late and I was so upset, I was worried. Once he was about an hour late and I called the hospital and talked to the doctor twice, I was shaking, that was in the beginning. The doctor said, “Does he have any, you know, diarrhea or has he thrown up?” I said no, he said “So, don’t worry. Ten minutes or 15 minutes is okay”. Then I realized okay, but I was scared.—P4
New normal	…when I first started I was more stressed on remembering to do it. But I felt like now whenever my daily routine, when I’m done and ready to go to bed I have a routine that I go downstairs, I go into the room, I get everything ready. I think it just has to be, you shouldn’t be scared. I mean you should more or less just be prepared.—T6
	I think that they’re just these minor ah-ha moments that happen along the way, where whether it’s just like even a phone call with a friend or a client or something, you’re like, “I can’t do that,” or “I don’t want to do that.”… My tendency is always to be like everything’s normal. Even after he was born, I went back to work after 6 wk, thinking, “I’m going to make life normal.” I think for me, it’s like I get so tired. I’m like okay, readjust, like that’s kind of a silly expectation. And a lot of times for me it takes a sounding board. My sister has been a great sounding board. I have a couple of attorney colleagues that are a great sounding board. They’re like, “No, you can’t expect that.” You know.—P14
	You talk to the other parents and you’re like, we’ve had a couple of bad labs where we had to get biopsies. Or, the worst was she had to have her ureter re-attached because it was letting urine back up into her kidneys. But the other families that I hear about, the constant rejection episodes, and over and over, and losing kidneys, or having a rejection episode and having to be hospitalized and go through all the steroids, and all that stuff. I’m like oh my gosh, we’ve never even been close to that. So, I think our normal is a lot better than other normals for kidney transplant patients.—P11
	I think I am in awe almost every day of just normal stuff that he does. He goes to school, and he can run around and things that when I was pregnant we were like, will he be able to do this? There were so many questions, and so I mean it’s still sort of mind blowing to think that he’s got a transplanted kidney in there. So, I was like, how could I… so this is one random picture of something normal. He puts on his backpack, and he goes to school every day. He’s just a normal kid in that sense. So even though we have all this other stuff, like a big part of my experience, is just like constantly, like I can’t even believe. It just kind of blows my mind…Just normal kid stuff that he’s able to do (Figure 2B).—P7