Another difficult thing has been that my family falls apart a little bit while my son and I are in the hospital. My husband has gotten better and better over the years at keeping a routine at home, but that used to be a huge struggle… I’m always pulling my hair out here at the hospital because things are going wrong at home and people are calling me upset like I should fix it, and I can’t. I just tell them, “I’m here now. I’ll do my best when I get home.”
So focused on her care
Mom: When I look back, I do feel like – not that I didn’t bond with Sophia, I definitely bonded with her – but I feel like there were a lot of times I was so focused on her care and the tasks that needed to be done, and worrying about when she was going to get so sick that she was going to pass away, like, “When was going to be the end?” that I didn’t enjoy her baby stage…I think that’s one regret that I have, that I would’ve tried to enjoy her more. But it’s hard when you think that she’s going to die very soon, and you’re worrying about how that is going to work out.
Dad: I probably didn’t bond with her even as close as you did. She was really hard to take care of!
Mom: A lot of medical work.
Dad: Mom was the nurse, so she wanted to take care of her: she’s the mom, she’s the nurse. And we had a one-year-old, so I pretty much stayed with our other daughter, I took care of her. I didn’t even feel comfortable holding Sophia right!
Parents of Sophia, 4
We had to really think about it
We always wanted another child, but actually had to really think about it. We waited this long (I just had his brother, he’s 2 months old) because we were scared. You don’t want to have to go through that again! The liver team reassured us that it wasn’t genetic, there was nothing we could have done, it wasn’t hereditary…before we actually thought about having another child, we went through all of those steps to make sure that there wasn’t anything we couldn’t prevent. Because we didn’t know Noah was going to be sick before he was born! It’s just scary – you hope you don’t have to go through it again.
Mother of Noah, 5
A really difficult time
One of the hardest portions of the whole thing was her brother, because he was five, four and a half, at the time, because were away from him for a huge amount of time. He was bounced around from relative to relative and house to house – and up until then he very rarely went anywhere! So he went through a really difficult time, a time period of anger and all of that, so that was really hard.
[Later] When you go through something like that and you think you might lose someone, it just makes you really appreciate all the little things in life, and all the other stuff that seemed so important is just so silly! It definitely has made us a closer-knit family. Her brother adores her, and he’s getting used to the whole idea of her special needs too. But it has definitely brought us closer together.
Mother of Lydia, 6
For our older daughter, it’s a very challenging life. Nobody signs up at the beginning of the day and says, “I would really like to have a kid with a catastrophic illness, or a sibling with a catastrophic illness.” On the other hand, she’s very engaged, she’s very compassionate, she’s very, very articulate and smart about the process, about mitochondrial disease, about other kids that have any kind of health challenges. She tends to be the one who reaches out in the community to help somebody if they’re struggling, and just has a different awareness. She’s twelve, kind of going on a much older age by necessity.
But I think she feels like she’s a part of us. Our foursome matters.
Mother of Meg, 9
Supporting the sibling relationship
They’re getting older. They’re 4 years apart to begin with. Meg is growing up and becoming more articulate and more her own person and less the little baby that’s sick, or the little girl that’s sick. I think the biggest thing is time making sure that we have individual time for each child, and then there’s really required time for them to be together and work it out…Really saying, “It matters. We need to have afternoons where neither of you have activities and you just have to be near each other, and we’ll cook dinner together…”
Next week we’re going to the Cape and, you know, there’s nothing open out on the tip at this time of year. We’re taking our dog, and there’s beaches to walk on, and there’s board games to play, and that’s it! We have no plans, we have no tickets, we have no events: it’s just the four of us in a house with a dog, a beach, and a board game. And I think those are the things that help to bring you together again, much more than trying to go on some elaborate vacation somewhere.
Mother of Meg, 9
They enjoy the time we have
My older daughter did cry a lot because I wasn’t there. We did try to explain to her that, “Austin’s really, really sick, and he’s going to be going through all this.” And she’s not really much of a talker, but we would try to explain to her and she would sort of understand. And I think it’s brought us closer. I think they’ve gotten closer to me because I’ve been gone for so long, and they realize that, you know, “She’s not going to be around a lot of the time,” so they enjoy the time that I’m there.
Mother of Austin, 9
I think certainly him and his brother are very close, and much closer because his brother was there for the whole thing. He saw him at all the different levels of his recovery. So certainly I think it brought them much closer together. And you know, we as a family just appreciate life much more than we did before any of this happened.
Mother of RJ, 12
We’re healthy people now
It’s still a huge part of our relationship. I do the, “Are you okay? Do you feel all right?” She coughs; I go, “Do you have a fever?!” It’s better than it was, but it’s too much still. I need to back off. I have to go, “Oh, we’re well! We’re healthy people now.”
Mother of Eva, 13
His sister was very scared because in the last four years, she almost lost her brother twice. She would be devastated without him, and she is happy that he has a transplant now.
We were always very honest with her. Any questions she asked concerning her brother’s illness we answered as honestly as we could. She came to all of the family meetings; she is part of the family and should be included in what’s going on. There shouldn’t be any surprises. She learned a lot and it worked very well.
I think the effects of my son’s transplant experience on the family were mixed. Some were good. I had one child who was very upset and unhappy that we were having another child and very resentful about Steven. But when he became sick she realized that she didn’t really feel that way, and that she really loved him and wanted him to be okay. I think had he been healthy she might not have come to that knowledge as quickly as she did. So in that respect it was good for her. It was difficult for another one of my children because he has special needs at school and I was not able to advocate for him, and still over the years have not been able to advocate for him consistently and really get him the education that he needed.
Siblings are a good support structure. I think that siblings can actually provide a sense of normalcy that even parents can’t. I think that Lisa’s sisters keep her grounded; they don’t allow her to have a big head. You can get a big head, because you do get a lot of attention that kids normally don’t, negative and positive.
I also picked a few people who were willing to be my contact people. There was one lady at church who was willing to be in charge of support things for me. She would call and arrange for people to come to the hospital and visit or for people to take care of my children or things like that. There was also one family member who kept all of our family updated on what was going on, and who would arrange for anything that another family member wanted to do, so that I wasn’t the one who was always getting the calls. I shut off the phone when I’m home with the kids on the weekends. We have a routine; my husband comes in to the hospital on the weekends and I go home with the other children. I do not answer the phone when I’m home with the kids, because if I did I would be on the phone the whole weekend instead of focusing on them. My advice would be to know how to thank people very much for their concern but also let them know that you have to focus on your family.