It’s made it more difficult for him socially. He doesn’t have a lot of memories of his younger years, and we know that most of that is because of the trauma of the third transplant: he basically lost a lot of his life prior to that, he has very little memory of any of it. That’s sad, but can’t be changed. I think it has made him more anxious at times…but then again it’s hard to know. Some of it is personality. But sure, it’s changed him. But I think it’s also made him more compassionate and understanding of other people and their differences.
Mother of David, 15
Relating to children versus adults
She’s been in situations where she’s been around a lot of adults in her life, much more so than most children, so I think that has its advantages. She’s much more outgoing and she relates really well to pretty much any adult, including doctors. Where she hasn’t had that much experience is with children, because we’ve kept her out of situations where kids might be for a long time. Particularly she’s starting preschool late, we kept her out a year later, so that is an interesting dynamic, to see her relate to children versus adults…she’s hesitant, she kind of observes first. She’s much less outgoing than she is with adults.
Mother of Hannah, 4
Dealing with Teasing
Difficulties and heartaches included the amount of hair our son had at such an early age. The kids made fun of him so I resorted to removing the hair from his arms with Nair. I trimmed his eyebrows so they weren’t quite so obvious. Also, when our son was in elementary school, he had so much gum covering his teeth that he looked toothless. It wasn’t until he was 9 years old that he started having oral surgery to remove the hyperplasia. This also made him a target for ridicule by his peers. But I think the way we handled the adversities was to always reaffirm him, as any parent would do. We applauded his skills at learning songs, reading Sesame Street Books, learning to write on his own, all the things we saw him doing. We took note of and acknowledged his strengths. We did not want him growing up feeling weak or different in an unhealthy way, but unique and strong in character.
It’s getting better
There was a huge pullback, because she couldn’t do sleepovers or things like that and she couldn’t keep up and she doesn’t do sports teams. So then the one thing she did was concert chorus, and she stopped that and she hasn’t been able to go back because she’s [gasps]. That makes me cry more than anything. But I have to go, “All right, it’s getting better. She’s being more proactive about inviting people over, and she’s become quite a little cupcake queen! She bakes and that’s sort of how she’s made connections with people at school. Everyone’s like, ‘What did Eva bring?’ and they want to sit with her at lunch. We joke and say she is buying friendship, but hey, whatever works! [laughs]
Mother of Eva, 13