It’s a lot on the parents. I try to stay strong. The hardest adjustment has been the medication and remembering the cath, getting that into your schedule. You already have a busy schedule, so now you’re trying to fit in cathing in every 3 hours, and then an overnight bag to get in as well. But it can be done. I mean, once you get in the routine, it’s okay. Manny’s father and I have turns actually, who’s going to cath at night. So usually I do it, my husband works at night. And the nights he’s not, he does it.
Mother of Manny, age 10
It is what it is
I remember thinking, “Oh my God, she would be so easy if she didn’t have these health problems. Her life would be so easy!” But has it affected our relationship? I think when she was younger it did, because, the poor kid, I was always saying, “Have you gone to the bathroom? Have you gone to the bathroom?” I always felt bad, but I had to do that. And I mean, you can’t change it: it is what it is…if I say, “Oh, wouldn’t that be great?” that’s saying I don’t like the life we have.
Mother of Elizabeth, age 16
It kept us all together
Vacations were always big because we would take two weeks and just go camping and forget about life if we could each year. That was kind of our one thing that really kept us all together, I think. It was a big part, because we just had a vacation, no matter what it was. Even with hospitalizations we would still try to put our vacations in, to try to do that. And then just whatever my other son had for activities, whenever possible, we tried to make every activity. He was in baseball, he was in Boy Scouts and in basketball. So we just really tried to really concentrate on going to those events also.
Mother of Robert, age 16
At least there’s one person in their corner
I used to say to my oldest son, “You can’t even imagine. You’ve been a teenager but you can’t even imagine being a teenager, or even an elementary school student, going to school, having to catheterize yourself, having to take medication. You can’t even imagine what that feels like! But if you can take a step back and think about that, how you would feel, maybe it would give you a better understanding about your brother.” For moms I would say, I think moms are always clued into their kids. And I can’t remember who said this, but every child needs at least one person that understands them and is in their corner. So even if you’re in a family where everybody’s not getting it, at least there’s one person in their corner who’s getting it!
Mother of Isaiah, age 17
A tighter circle
Her younger sister is very much of a caretaker person…she will do pretty much anything for Siobhan which has been very nice for the both of them. I think her condition has made our family a tighter circle than it might otherwise be because we probably do not get out as much as everybody else.
From just our parent perspective, probably the biggest impact is that anytime we want to go out to dinner together, we have to hire a babysitter who has the capability to cath Siobhan. Even though she’s self-sufficient now, if we’re going to be more than twenty minutes away and for some reason she can’t get it, we have to come home. If we’re three hours away having a weekend at a bread and breakfast, we have to hire someone who can cath. Fortunately, one of our babysitters decided she was happy to learn this, so she knows. This is actually one of Siobhan’s former aides at school – when she was in grade school instead of going to the nurse’s office, her aide cathed her, which the nurses liked because they had a million meds to do and insulin shots and stuff like that, all at lunch time, so one less kid was great! And the aide stayed on as a babysitter as well. But our baby-sitting pool is extremely small if we’re going to be gone for more than four hours…I think part of that is just our neurosis. I don’t think she’s missed a cath in months.
Father of Siobhan, age 9
A lot of time and energy
As far as the impact to the family, everyone is very supportive of Ryan. However, it does take a lot of time and attention away from the other siblings. My oldest son enjoyed our first long trip to Boston with us because it was an adventure and we got to do fun things like sightseeing and visiting old friends as well as the medical appointments.
This has taken up a lot of time and energy in our lives during these various phases of discovery and treatment. I have two very young boys (ages four and two) and I have ended up accepting lots of help from grandparents with childcare while I take Ryan to appointments and his current treatments. Right now we spend every Monday morning driving out of town for Ryan’s PTNS treatment and back. But I try to award everyone with some sort of special treat on the drive back. Lately, the little kids have had to ride along, but the receptionist at the practice doing the treatment is great to them and puts a kid’s show on for them to watch and rewards them with lollipops for good behavior while I am back with Ryan. (My oldest son watches them.)…
We talk openly about it all the time. We are constantly talking about how wet or dry a day we are having because we are looking for success with PTNS. I don’t think it has changed too much over time. If anything, our talking has gotten even more open. Because we discuss it openly and there is no “shame” involved, Ryan really doesn’t see it as anything embarrassing, at least among family. He doesn’t want to talk about it with friends, of course, but he feels comfortable talking with us about it.
Mother of Ryan, age 11
Then it becomes habit, it definitely becomes habit, and it doesn’t stop us from doing what we need to do, but you always have to make accommodation, you just have to plan ahead all the time. Luckily I’m a fairly organized, detail-oriented person anyway, so you know, it’s in my genes to think logistics all the time anyway. This has just sort of honed that skill.
Mother of Henry, age 12
A different type of bond
I think we have a different type of bond than what some other parents and children have. I have a little bit more understanding of how his feelings are.
There are certain things that, I will agree, I baby him on. When it comes to his medical care and things that can hurt him, I think I’m just a little more aware…When something is going on that he’s not sure on, he knows he can ask or even talk about it and I’m going to take him seriously. I’m not just going to say, “Well, no, it’s nothing, don’t worry about it.” We talk about it: “Where does it hurt? What does it feel like? How long did it go on for?” We’re active in the conversation, where I don’t just tell him something I think is going to make him feel better. I’m upfront and honest with him. So I think that makes him a little more comfortable to discuss things like that with me…I’ve seen other friends of mine where they kind of sugarcoat it or they don’t really discuss it and the kids just seem very confused. They don’t really understand what’s going on and what’s happening and it just kind of scares them. I don’t have that feeling with Ethan. He has a very clear understanding, he knows he needs to discuss certain things with certain people when they’re happening, and there’s a good respect between us.
Mother of Ethan, age 13
A pretty good job balancing
I think we have done a pretty good job balancing. I often felt (especially when Dylan was in the hospital going for so many visits) that the girls would start to feel like all we think about is Dylan in the family. I would say a little bit less now, because his health is so good that 100% of our focus isn’t that, but for a while I was afraid of that constantly.
But the girls have been great. Every time I brought it up, because we have talked about it – I’ve gone to them and if they were at the hospital all day, I would come to them and say, “I hope you guys understand and are you feeling slighted?” We have all had that conversation, and the girls look at us like we have six heads, like, “No, of course, we know. This is our brother!” So they seem to take it good. We try to keep them as informed as we can so that they don’t worry. At first obviously they were worried, but I think that my husband and I have done a good job of making sure that they know that Dylan is okay, he is stable, and just keeping them informed is the big important thing.
Mother of Dylan, age 16