He’s a boy and he’s four and a half, and it was really hard for him at first as well. He accepted it, but he was also scared of what it looked like and didn’t want to take a bath with Patrick. So at bathtime, neither one of them wanted to get in the bath, and they didn’t want to take one together! But now, over time, things have gotten better, and they call his stoma Crabby, so they have a name for it, and he says, “I’ll help you!” (to change the bag)…We change the bag every other night so it’s kind of become routine. Patrick still doesn’t like to have it ripped off of his skin but other than that he does lie down and wait for us to get done putting a new one on and stuff.
Mother of Patrick, age 2
She just thought that was normal
It was her only sibling, so she didn’t really know any different. It’s funny, because we were looking at pictures, and she just assumed every baby had an operation like that. She said something like, “I wonder when he –” (about another relative) – “when he had his operation.” And I was like, “What operation?” So she just thought that was normal!…
I don’t think it really has affected his sister at all. She’s kind of protective, but I think she would be that way anyway.
It was stressful between my husband and I when he was in the hospital the first time, for his work schedule. The second time we planned it a little better for the time of year, because he’s self-employed. I would say for other families to go a little bit beyond what they say for hospital stays – so if they say two weeks, plan a month out.
Mother of Eric, age 8
There is no self-pity
The daughter next in line to her, it’s kind of a mutual admiration. She looks up to her big sister as this cool kid because she wears make-up and she’s the stylish one – so Amalia looks to Grace for inspiration for nail polish, and then Grace looks to Amalia, saying she is her inspiration. That’s why she makes good grades in school, that’s why she is doing what she is doing, because if Amalia can do it she can too. So they feed off each other in a really positive way. There is no self-pity.
I have to be honest, I joined support groups and they turned into pity parties. We don’t do pity and that has kind of translated to the other kids. They don’t do pity. This is what we deal with and this how we deal with it and we just put one foot in front of the other.
Mother of Amalia, age 9
A little bit of jealousy
Mom: Her brother likes to be the center of attention, so there’s probably a little bit of jealousy and a little bit of, “What’s going in there? She’s getting all this attention, and mom and dad were in the bathroom, and Nana and the babysitter, and what’s with all this? And she got a present!”
Meghan: And that all stopped when I told him.
Mom: So she finally told him what’s been going on.
Meghan: Yeah. Sometimes that’s the only way to go! You got to tell him what you’re doing so he actually can cooperate!
Mom: Justin gets very…you know, he’s a mama’s boy and gets goopy when he gets tired, so for awhile at first, it would be like 6:30 and getting close to bedtime, and he would be sitting on my lap, going, “Why do you love Meghan more?”…I think basically we tried to explain to him what was going on, but for a five year old boy it’s so abstract, and I don’t want to show him that video, because that’s a little too graphic!
Meghan: But mom, I think the only way to explain was for me to do it!
Mom: I think it was kind of a rough beginning of the year for both of them last year…but I think honestly within a month we were pretty much going this is great! I’d say within a week, other than the school, we were thrilled with it.
Meghan, age 8, and mother
Not to mention that Kristin did not have any words until she was three years old and when she did start using some words to communicate, they were unintelligible. Kristin’s older sisters were big helps because they really made a big deal if she even attempted to go to the bathroom. They were very supportive while she was going through all of this. Her older sisters were really positive and would hold her hand or try and calm her down when we attempted to use the catheter.
Mother of Kristin, age 4
Back to normal
My parents were very involved with Ryan at first but then they got back to normal and they began to do things with everyone again, not spending all their extra time in Ryan’s bathroom. I am not in any way, other than watching my younger brothers, involved.
Brother of Ryan, age 11
We tried to keep her routine as normal as possible
My daughter was two when he was born, so she was just over two-and-a-half when Henry had his surgery. It was hard, but my mother came and stayed with us and that was very helpful. And like I said, fortunately we lived near the hospital, so her routine was not severely disrupted. She still went to her child care, so we tried to keep her routine as normal as possible…Fortunately our neighbor across the street was a pediatrician and they were our best friends and my son’s godparents, so that was also very, very, very helpful, having that support system…
It’s a hard thing to have to do and we manage to fit it in to our lives really well. We travel, we travel internationally, we don’t let it slow us down at all. We just have our supplies – we bring it with us. We went skiing this year!
Mother of Henry, age 12
They all stepped up to the plate
It was hard when he was younger. Even the day he was born, the kids were home and I went from my hospital to Children’s Hospital for seven days. And I would call home and the kids would go, “Mommy, where are you? I miss you!” and I’m like, “You have auntie, you have Nana, you have Grandpa. Alex’s here all by himself, I’ll be home when Alex’s home.” But they all stepped up to the plate and I always had somebody, like my mother-in-law, everybody, even the neighbors. They knew when he was coming home, they would send food to my house and everything.
And even after a while it got to the point where we’d say, “He’s going to the hospital, but don’t buy him a gift, come visit!” Because they would all come with presents and gifts and games and this, they couldn’t come empty-handed. It was like, he’s going to be spoiled!
Mother of Alex, age 17