A lot of it is your surroundings! With my husband working at Blue Cross Blue Shield, whether it was because of phone calls or because it was a big company, he was exposed to people having problems with their children. At my job, there was nobody that ever had a problem. You’re just like, “Okay, if nobody has a problem and nobody’s talking about this – not an allergy, not a broken bone, nothing – how are you even supposed to bring this out to somebody? It’s so foreign, and no one would understand!” And you didn’t even understand yourself to completely explain it.
Mother of Jared, age 6
We knew nothing
We knew nothing, nothing! And the Internet, yes, was around, but it showed you pictures you probably shouldn’t have looked at, stuff that didn’t hit home, because it was worst-case scenario. So there was no one to talk to, no one to ask questions to, you go on the doctors – okay, I guess this is what we have to do. So that was the hardest part… That was my problem: you wanted someone to talk to that knew, and could relate, and could at least tell you what they did to make a decision. If there was somebody I could talk to that had the vesicostomy, and said, “Okay, the appendo-vesicostomy is the way to go,” – if I could talk to somebody like me that went through it, that would be wonderful. But there was no one that I could ask, “Okay, would you close the vesicostomy?” and go with that. That’s the hardest…Again, we looked up as much as we could on the Internet but it did not pertain to Jared 100%.
Mother of Jared, age 6
Bladder exstrophy support group
We go to the support group (they meet twice a year) which is really, really helpful. It’s evolving to different things now too. The adults usually meet and the kids come, and there are children who play and that sort of thing, but there are some teenagers now, or a few, so they have their own little group.
It varies who shows up. Lots when I went last spring! A lot of people were there, because I know last time it was the first time ever that they split the moms and the dads. Geez, there had to have been like twenty mothers. There might even be more. And then usually there’s a topic…They call it a bladder exstrophy support group sort of thing, but there are some cloacas. Elizabeth hasn’t really met another strictly cloacal person, I don’t think. No, wait a minute, I think she did meet one, an older girl who was in college. But it’s funny – they won’t talk about their own personal stuff, it seems! She was still shy. Being incontinent is not just a real socially acceptable kind of thing, so even amongst themselves, there’s sort of some shyness.
Mother of Elizabeth, age 16
Beyond medical advice
I think it worked out where our physician knew about us, and this Noah came in with similar symptoms, and our doctor made some comments to the effect of, “Oh, this is my second family with this set of problems!” And of course the doctor got back to us and we said, we insisted, “Please give our contact information to this other family. We have a lot to share!” And that’s really what started this relationship…
There’s a particular site, it’s a tethered cord site. It’s under Yahoo! Groups and it has been invaluable for us. Especially when we were first getting started with the whole continence management issues, for practical questions like, “What works? What doesn’t? Is it painful?” It was an enormous learning experience, and almost self-taught.
I’m not dismissing the instruction that we had here – we had great instruction here, but when you go home, that’s it. You know there are all these day-to-day things that pop up, and it’s really important I think to get in touch with these listservers. It’s not medical advice, but it’s beyond medical advice. It’s how does a family, how do caregivers, manage? You trade stories and the advice is just wonderful. It comes from people whose kids are now teenagers but still are on the site and they have been through it all. And you see they’ve been through it all, and it makes it much easier to deal with. It was like a pathway. So mentally, spiritually, for my wife and I, it’s been wonderful.
Now to be honest with you, we rarely read right now and post less frequently…but it used to be every posting – you just clung to every piece of information! Once you develop that spectrum of anecdotal knowledge or evidence, then you don’t read it as much. But if you were to watch the flow, you could see new people coming in, opening up: “Please help!” and, “This is the problem.” You get all these responses from people who have been through the problem, and it’s just a wonderful process. Highly recommended to anyone in this position.
Father of Ellie, age 8
Mother of Siobhan, age 9
It doesn’t do anybody any good
You know the pros and cons of the internet age, all the information out there. I do subscribe to some support groups. Most of the times I’ll just take a quick look, do a quick scan and I’ll delete it. Especially the one that I get is primarily adults who are in terrible shape, who just have a litany of horrible problems, of pain, of just horrible situations! And you just – I don’t want to know it! I don’t know what’s doing to happen with Henry, and I can’t bear to think of the possibility of when he gets older. It’s good to be aware of what could happen, I think I need to be aware of it, but I don’t like to fixate on it.
Sometimes it’s useful; sometimes I’ll respond if there’s a parent with a child newly diagnosed, that kind of thing. The first time I got involved, when he was a baby, there was a family support network that was wonderful, and I don’t know where they’ve gone these days, but they sent a blanket and a teddy bear and they were really very nice.
I would think that, as a parent of a child, the most important thing is to find other parents with children in the same situations, at the same age, that kind of thing, because if you start to look for support groups and you find these adult support groups and then it freaks you out and you think you have this lifetime of disaster ahead of you…it doesn’t do anybody any good to think that way.
Mother of Henry, age 12
Really empowering for Henry
We were visiting the doctor for a urodynamics test a couple of years ago and we came out into the waiting room and there was a family with a boy Henry’s age, who had tethered cord, had the surgery, needing to do self-cathing – very reluctant, very resistant, having lots of problems with it, very afraid. And the doctor asked Henry, “Henry, would you mind talking to Jon?” And he was like, “Yeah, I’ll talk to him,” and it was amazing! We sat there in the waiting room and my son literally took out a catheter and basically demonstrated to this little boy, “This is how I do it, I wrap it around my hand like this, and I open up the package like this, and it doesn’t hurt and you have to da da da…” and schooled him on it, and was amazing!
For Henry to talk to another kid who had the same problem that he did, and for him to speak it out loud to another person without being worried…I think it was really empowering for Henry! He was so empathetic and so nice, and this family was so impressed with him. The doctor was really excited to see the way they connected, and the parents shared too. We shared how we dealt with certain things, and they had their own bowel regime, and subsequently we got together with them – they came over to our house and Henry and Jon played…It was good for the boys to know that there are other boys the same age with the same situation coping, and that they’re not completely alone in this situation. And every family handles it a little bit differently. Sometimes you can share ideas and think, “Gee, that’s a good idea! I should try it.” So it’s really great to connect families.
Mother of Henry, age 12
Nice to hear the end of the story
I was at Wendy’s one day, and a couple was sitting there and saw her with her crutches, and they came over to me and said, “We don’t mean to be rude, but does she have spina bifida?” And I kind of explained what she had and I said, “She has a lot of the same deficits as kids with spina bifida but to a lesser extent – actually she’s better off than kids with spina bifida at this stage of the game.” And it turned out their daughter had spina bifida and she self-cathed. Their daughter was in her thirties now and she used a steel catheter, which I was like, oh! Steel catheter, not very flexible, I guess…She couldn’t see, so her father rigged a mirror, like a dentist mirror kind of thing, that would be able to clip on the seat so that she would be able to do it. And she ended up going to college and she’s married, she had a kid…And they just really wanted to share with me that she was married and had a kid and she was doing great. She used a wheelchair for distances but mostly she used the crutches, she had a great pregnancy, that kind of thing – which I thought was really nice to see down the road. I just thought that was really nice to hear, like, the end of the story.
Mother of Kayla, age 14
There’s other people that are going through what I’m going through
What I always wanted for him and could never find was a group so that he could talk to kids like him, because I think that would have helped a lot – even if he just could have talked to an older person who had had the surgery done like him. He did well, but there was a lot of anxiety that we had to address and deal with – “Don’t worry, don’t worry,” but, “What if? What if?” Worry about it when it is, don’t “What if?”
But just to have talked to someone to say, “Oh yeah, it was a piece of cake,” just the positive things of it…I think it would be better for them. That’s the reason why we came here and why we said to the doctor, “Anybody that’s going to have the surgery, Alex would be more than willing to talk to them.”
Because with me, even to go to those Sped PAC meetings once a month and just to know, wow, there’s other people that are going through what I’m going through, worse than I’m going through! Or just to have a mother say, “Call this doctor up.” Like, wow, that took three days of searching online, the connection of the information that just alleviates your worries.
Mother of Alex, age 17