We go to the bladder exstrophy support group at Children’s, like three or four times a year. And I’ve met a few people online, originally through the ABC* thing but now we just chat on Facebook. So it’s nice, but it’s more me talking to the parents. Eric knows about it – I’ll show him the pictures and say, “This little boy…” And he actually did write a letter to one!
Mother of Eric, age 8
*Association for Bladder Exstrophy
Little things get you by
I had my family and Dan’s family, and everyone understood. My sister-in-law’s a nurse, so that helped. She came over a bunch of times and just helped out. A visiting nurse service came here after the second surgery, so that was a big comfort too. Just little things like that get you by…
I kept a lot inside. Whether that was good or bad, how I dealt with Jared was not talking about everything I went through to people. If you talk about things, it makes them real, rather than just doing what you need to at the time to get by.
I do want to add that going through this with Jared and having two children so little and needing help with normal life activities made it easier to deal. There was no time to think or feel sorry for yourself – you were always busy and then just fell asleep of exhaustion.
Mother of Jared, age 6
You need each other to lean on
My husband says I’m always positive. I just look for positives, because there’s nothing really you can do about it. You just have to do what you have to do, and that’s how I looked at it: I was there and that’s what I had to do, I had to be there.
It would get frustrating. We would look for different people to just chat with. I have great co-workers that cover for me and are great to talk to. You just need to find someone that you can use as a support, and I had co-workers that I did that with a lot.
We were just bouncing back and forth off each other, my husband and I, and it did get stressful but we figured, we knew a lot of people that had other problems that broke up, but it was like, if you can’t do it together how are you going to do it alone? So that was a big part – it kind of keeps you together. You know you need each other to lean on.
Mother of Robert, age 16
I didn’t want to show her how upset I was
It was stressful for me. I tried to support Alexa and talk to her as much as possible so that she wouldn’t feel like she was the only one. But I kept a lot inside and away from her because this is my little girl and I want to make sure that she’s healthy and nothing happens to her, and I felt terrible that she had to do this because it was such an invasive procedure…I didn’t want to show her how upset I was. And she probably doesn’t even know; I would go in a room and cry, “Why is this happening to her?” I would talk to my husband about it and my friends.
Mother of Alexa, age 16
One day a month
I exercise a lot, I like to go to the gym. Let me tell you, there are days when I’ve had a kickboxing class and I’ve beat the heck out of the bag, you know? Which helps, especially early on! That first year I would allow myself one day a month of sheer – you know, I would cry – because I’m worried about him. I’m worried about his sexual development; he doesn’t have a lot of sensation. You know, as a parent, I wonder about his ability to have normal, loving relationships when he grows up.
How’s he going to get a girlfriend if he has to deal with this?
It’s just hard enough being a teenager, dealing with ADHD, and I would think, “Oh, my poor boy,” and like I said, I would give myself one day a month of just feeling totally sorry for myself and for my boy, and then I’d snap out of it. And I haven’t had a day like that for a long time. It’s just gone, because you can’t constantly think about what’s going to happen in the future. It’s not healthy. I wouldn’t call it denial, I’m just calling it ‘not now.’
Mother of Henry, age 12
Mother of Dylan, age 16
I have a tendency not to panic
All my family is on the East Coast, so when he was having all these problems and everything he was going through, I was essentially by myself. His father was gone doing training in the military. There were some friends that I had touched base with in the family support group. It was more just take it day by day: you don’t panic, you just try to inform yourself of what’s going on and just keep an open mind.
And I’ve always been that way, where when it’s something of an emergency situation, I have a tendency not to panic. I more sit back and just try to relax and preoccupy myself more with trying to keep him calm and relaxed. I preoccupy myself with that, then I don’t think and panic during the situation. Then when I’m on my own and there’s time to think about it, then you have your little breakdown session. But as it was going on, it was just more of trying to keep him calm and relaxed and trying to comfort him, because he couldn’t really understand what was going on.
Mother of Ethan, age 13
Until we knew exactly what we were dealing with
Actually, not telling people what was going on really helped me a lot. I think my husband had a harder time with it, but not telling people made it almost easier for me because most of the people that I knew – like, I was pretty involved with my children’s elementary school at the time, and they treated it like a normal pregnancy. “What are you going to name her? What are you going to do about the rooms? Do you know if it’s a boy or a girl?” You know, all those happy questions that everybody asks pregnant people, and it kind of kept everything very light. If people had known there was a problem with the baby, they would’ve been afraid to ask me how everything was, and it would have been kind of gloomy.
So I really think that keeping it a secret until we knew exactly what we were dealing with definitely helped me to treat it more like everything was going to be okay. It was always in the back of my mind, but I think day to day it made it easier for me…I had one girlfriend that I talked to about it, and she was really supportive. And then once she was born, I talked to my family about it and they’re great. I come from a big supportive family, so they’re really great. And I’m kind of a control freak, so once I had the information and could make appointments with doctors and talk to doctors and stuff, I felt better… I think nursing really helped a lot! I tell people this all the time, and I said this to one of the nurses at my pediatrician’s office and she said, “Yeah, of course, all those endorphins.” When I would be starting to get crazy, I would just have to sit down and nurse her, and all of a sudden it would just all go away.
Mother of Kayla, age 14
It made our family closer
I went to a therapist, at the very beginning I did, when he was younger. The family came together. I had a very close family, my mother-in-law, my father-in-law, my husband. I was a little nervous when he was born because they say this makes or breaks the relationship, but I think it made our family closer together.
Mother of Alex, age 17