My advice is if there’s any type of problem, to see a specialist right away. That’s what we regret – even though we were seeing a specialist locally, they missed Patrick’s colon not working for two, two and a half years, so that’s a pretty big thing! If there any problems I would definitely recommend people going to Children’s right away instead of going anywhere else.
Mother of Patrick, age 2
Educate the parents
I think with cathing, first of all, sense out the parents, because how the parents go is how the cathing is going to go. First of all, see if parents are comfortable with their bodies and not hung up on ‘down there’ or ‘private’ – if parents are using the appropriate body part names and things like that. Educate the parents, get a feel for where the parents are. If the parents are doing pretty well then the cathing is going to go pretty well. As long as you can keep the parents in good shape, I mean, that’s really the way it is.
Mother of Amalia, age 9
What you feel is right
You can’t think too much about it or go on anyone else’s advice. You have to go on what you feel is right for your child, your family, and yourself as the caregiver.
Mother of Jared, age 6
If you need to cry, do it
That’s another piece of advice for parents: be honest with yourself. If you need to cry, for God’s sake, do it. I’ve gone into BJ’s ostensibly to buy toilet paper, paper towels, and laundry detergent, and walking down the aisles I will have a few minutes by myself and something will hit me, and I’ll just sob my way through BJ’s and get in the car, and by the time I get home, I’m ready to do it again.
Mother of Amalia, age 9
Don’t give up
I guess my thing is don’t give up, because I certainly haven’t given up. I mean, we’ve made some progress: she doesn’t get UTIs, those used to make her very, very sick. She doesn’t get those anymore, so that’s a very good thing, and I focus on that.
I remember thinking, “Oh my God, she’s never going to be able to cath herself.” And she is! That was such a breakthrough, it really was, because we’re thinking, “Oh my God, she’s got to do this and if she doesn’t, she’s just going to get sicker and sicker…” Even though she didn’t feel sick, she would have asymptomatic UTIs. You wouldn’t know until she went for a urine test or something, then once it hit she’d be really sick…so it was good, once she learned how to do the relaxation type of therapy, the combination of that and the nurses to really, really show her how to do it. So that was wonderful. There are a lot of positives there…so I guess just don’t give up…
I’m lucky I’m not alone. Her dad and I, we just are close. How do I deal with it? I pray, I guess I pray. I try to do self-calming, because what can you do? And you have to really give yourself over and have complete faith. But also be an advocate. That’s one thing: as great as I think everybody here is, basically, sometimes they might miss something. I think they should depend on a parent, or their patient if they can really verbalize.
Mother of Elizabeth, age 16
What am I supposed to learn from this?
My attitude is, “What am I supposed to learn from this?” Because if I start thinking about what I can’t do or the concerns I’m going to have, I’ll never get over it – and that’s going to put me in a depressive state. And I knew with Isaiah, if he’s in a depressive state and he sees me in a depressive state, there’s no hope!
So I look at each phase as, “Okay, there’s something I’m going to learn.” And what I gained from the whole experience is that you can do a lot of things you think you can’t do. Like with the needles – when we had to give him injections, I was like, “No way! That’s never going to happen!” I told them, “I can never do that. I can’t see poking him.” And it took a long time before I would do it, but eventually I did. That was the last time I said to myself, “I can’t do it.” It was always, “Okay, I know I’m going to have to do this. How it is going to happen?”
Mother of Isaiah, age 17
It is a urinary problem, not the end of the world. With your faith, patience, and research and especially time it will be solved… Always do your own research, don’t wait for information. Look for it and take your time with making any decisions in a health issue because the medicine is always ahead of us. Make sure you tell your child it is not his fault, it is a problem that the whole family will help with. Never be away from God. He is your strength.
It is a blessing to have all these wonderful doctors and nurses. But always stay away from doctors that make quick decisions on big surgeries that can wait.
Mother of Peter, age 13
Advice for clinicians
Just let the families tell you what their issues are and how they’re dealing with it. I actually work in a doctor’s office, I’m a nurse, and I usually tell the residents and the doctors that come through, “If you just would listen to the parents, they actually know a lot because it’s their child. If they tell you this happens, then just believe them. Ask them more questions, make them explain it if you need to, but really just believe them, because parents don’t make up stories, and when they tell you that certain things are happening over and over, it’s really true.” Just listen to the parents and go with what they’re telling you and then try to investigate it more instead of just telling them that it really didn’t happen or that they’re making it up. Because a lot of times in the ER they used to look at me and say, “Are you really, really sure?” But you are sure!
Mother of Robert, age 16
You have to be willing to learn the lessons
I do sewing, I do music, I do meditation. I look at what she has taught me, where I’ve been and where I am today – because when this child came into our lives I was rather a know-it-all, a special needs adoption attorney, and she has taught me humility, she has taught me faith. I was the kind of person who needed to be in control, I needed to know what was going to happen next week, next month, next year. And to be honest with you, right now, I live on nothing but faith. There’s nothing underneath my feet. And for me that was a biggie. I resisted, I fought it pretty hard. And now I recognize – the way she came into our lives, the way things happened, it was meant to be and I have accepted that, that this child was meant to be. To me as a parent you will have to be willing to learn the lessons the experience has to teach you.
Mother of Amalia, age 9
Trust your instincts
Partly it’s just that you have to trust your instincts and know when something’s not working. You know, a doctor, even when you’re with the head of Urology at Children’s Hospital, can be wrong. At first when he was prescribing these meds, we just knew they weren’t right. She was having accidents when she wasn’t having accidents before. So I’d call in and they’d say, “Oh, cut the dose in half, or do this or do that,” and it was like, “No, no, she needs to be off that.”… The pediatrician is not giving you what you want at an expert level. We went through this with Meghan for six months and my mom went through it with me for a year: the pediatrician I had wasn’t even testing me for a bladder infection! I had potty trained and was fine for about six months, and then I started having problems and my pediatrician just kept telling my mother I was lazy. “Oh, she just doesn’t feel like getting up to go to the bathroom.”
…I think that doctors let this go too often. If children are able to be dry consistently for more than six months, then they have a problem being dry for more than a month, there’s a problem. And that would definitely be my advice: don’t listen to the doctors, just keep going. Go to the next! Because if there’s a problem, there’s a problem. It’s only going to get worse, because it just feeds on itself: when they’re wet, they get more infections and then it gets worse.
Mother of Meghan, age 8
It’s going to be routine
It’s going to get better. It sounds so horrible – when they first describe it to you, you go, “What? You want her to WHAT?” And I can’t even imagine with a boy! So it’s just a matter of really truly give it a good chance, because it really does work. It’s just so much better than fighting with the bladder that you can’t control, that the child can’t control, everybody being frustrated and aggravated. It sounds extreme, but once you start doing it, once you’re a month into it, it’s going to be routine.
Mother of Meghan, age 8
Do that routine
I think follow up is most important, to follow up with the doctor and do whatever the doctor is saying. Do that routine.
So that’s what we are following – we are doing it regularly, catheter and medicine. We’re taking it at the regular time and following up with the doctor, and that’s what I recommend.
Father of Jaya, age 8
We were always very open with her about, “This is just the way you pee, and here’s why.” I think you have to give them the information. I mean, you can decide how much details you provide, but they need to know a little bit about their condition and why they’re doing the things they’re doing. If they understand the reasons behind it, it’s not just like, “You’re asking me to put this thing inside my body every couple hours! What’s up with that?”
Mother of Siobhan, age 9
If they’re smart enough to ask
I don’t think we have deliberately not talked about something. Sometimes we wait for her to bring it up so that she’s asking the question, and sometimes we’ve simplified the issue a little bit to be age-appropriate, but basically (and this is just not about the cathing but sort of our parenting philosophy), if they’re smart enough to ask the question, we need to answer the question, even if we have to simplify the answer to make it age-appropriate…
One of the things that I think is helpful is to say, “Well, it could always be worse.” And sometimes that helps to put it in perspective if you realize okay, yeah, we got a set of pants full of poop, and it really stinks and it really sucks, but you know what, she walks, she runs – it could be worse! And what’s a little poop between friends? If you think of it that way, you don’t feel so oppressed by it.
I think it’s also helpful to remember that there’s no such thing as normal. There’s averages and things like that, but for example, I can’t play basketball to save my life – I’m fine, I have a good life. Siobhan can’t stand up on her toes to do ballet – neither can I! It’s fine, and we have a great life…If you focus your life on all those things that you cannot do, you’re going to be unhappy. If you focus your life on the things you can do, you won’t be unhappy. Yeah, you have bad days, but you look at what you can do and you feel a lot better about yourself. And it sounds really simple and conceptually it is, but it is very difficult sometimes to do that when you’re watching all the other kids play soccer and you realize your kid can’t do that. And it’s like the back of your head needs to say, “So what? Who cares? She can do this and this and this.”
Father of Siobhan, age 9
What if your son had this problem?
We have had very good experience working with most of the medical professionals with Ryan. My biggest advice is to go with your instinct and push for more information or options for your child if you are not getting the answers you want. I always try to fight for the best care for my child with courtesy and respect, always being nice and polite, but pushing for what he needs gently but firmly. Sometimes with a medical professional, I have asked, “What if your son or nephew had this problem? What would you want to do for them?” Believe it or not, that is often very powerful and they have clearly stopped to think. Also, if you are not making progress with your medical professionals, ask around and find the best place for your child’s condition in the area or country. It may be worth a flight to see the best. Your doctor can probably make a recommendation.
Mother of Ryan, age 11
It’s made me feel thankful
Having a brother with urinary problems has made me feel thankful that I don’t have that problem. I have been taught so much by how I am blessed with not having the same problems as he does. Going on campouts monthly is something that is easy for me, Ryan has a harder time with camping though.
Brother of Ryan, age 11
Mainly, don’t make fun of them. Who knows, maybe in a couple of weeks your doctor will discover something that you have that is equally embarrassing. If your friends ever ask what is taking your sibling so long, just say, “Oh, he/she is probably distracted with something.” If what your sibling has to do grosses you out, just stay away from them when they do it and then play again with them later. After all, he/she is a human just like you.
Brother of Ryan, age 11
Find a hospital you’re comfortable with
I found it most difficult when I was trying to deal with urologists down here in Westchester and trying to shuttle information from one place to another. That’s when I made up my mind I’m only going to Children’s – because it’s so great when I walk into Boston Children’s to know that all of his information is in one place, that the doctors talk to each other, they go on the computer and they can see the notes that got put in and the last time he had a urodynamics and the clinic notes…The fact that he has a team working for him at Boston Children’s makes it so much easier for me.
So my advice for a parent going through this is really find a hospital that you’re comfortable with and go to the specialists there. Don’t be trying to go from here to there and shuttle all these different places, because the information gets lost – it’s so hard to keep track of it all! It makes it so much easier when you work at a place like Children’s.
Mother of Henry, age 12
Advice for clinicians
Open-mindedness is definitely helpful, even if they may not agree with what the parents are saying or doing, just to listen and give their suggestions a shot. Because sometimes the parents could be right! They don’t have the medical training and whatnot, but like I said, they see everything that goes on on a daily basis, and maybe something they’re doing for the child works for them and that child.
It’s not the standard, but having him on his side, for whatever reason, he was able to relax his stomach to where it wasn’t distended and we were able to cath him. And in time it would change. He can’t do it that way anymore – then it got to be sitting, well, he can’t do it sitting anymore, he has to be standing. So things change, they progress, and I would say the best suggestion is to keep an open mind and try what a parent is suggesting.
Mother of Ethan, age 13
A different type of normal
Once Dylan was diagnosed I feel like our life just shifted from what we use to think is normal to a different type of normal, one day at a time, making sure he is healthy. Some things are just out of your hands and you just go with it.
Mother of Dylan, age 16
I used to literally drive myself crazy
I try to tell people, “Just take today, tomorrow, next week. Don’t think about the long term.” I used to think when he was like, six or seven, “Oh my God, what’s it going to be like when he’s 16, 18, 21, 25?” You just can’t think about it because it changes along the way. Like when he was born, he was supposed to be in a wheelchair and not walk. When we got discharged, he had dislocated hips, club feet, scoliosis…and then when he got to age seven the school’s telling me, “He may never read because of his learning disability,” and I’m thinking “Oh my God.” And look at him! He’s almost running in the crutches, he’s reading, writing, spelling his name, on the computer, goes over to Jimmy’s, and does his TV and his telephone…
Try not to go there because I used to do that, I used to literally drive myself crazy. Just worry about today and tomorrow and the kids and getting to the soccer game and going here and doing this…and of course pay attention and do the best for him, but you really have to try not to say, “Oh my God, look at all this stuff, what’s he going to do?” Think positive, glass half full not half empty, and take what you have to work with and not what you don’t have.
Mother of Alex, age 17