From the Grown-ups with Exstrophy

I've asked all ages of people to contribute to the blog and I've been hearing from many adults about their experiences growing up. They have offered their stories, their advice and their hope freely to me and to my son. This is where you can find their posts! Feel free to add your own...

About the Seattle Conference

What an experience! The trip was not about lightning bolts, but it was life-changing in some subtle and not-so-subtle ways. The disconnect between emotion and intellect is an amazing thing. I've been well aware that I am not alone in this, that there are many parents out there who are living through the same trials as I am. I can run the numbers and figure out approximately how many. In spite of what I think I know, nothing compares to sitting across the dinner table from another set of parents and their kids, sharing intimate details about the medical procedures, social issues, emotional issues that we've been struggling with throughout our children's lives.

I left the conference feeling very good about the decisions I have made through my sons life so far. Many of my doubts have been erased. Medically, I didn't really hear anything I didn't already know, and I found that to be reassuring. The doctors and other medical professionals who spoke were fantastic across the board. I think they reassured many of us that, even if some physical realities will never be perfect for our children, they can be good, and they can get better. They made it easier to take a big picture view of our situations. A few doctors held break-out sessions with the children and it was nice to just "hang out" with the docs and be a little serious and a little silly for a while.

The other speakers that I had the privilege of hearing were incredible. Jimmy, James & Jessica gave me hope and more importantly, they gave me ideas. My son was quiet and resistant for most of the trip, but even he couldn't help but warm up when confronted with Jimmy, whose zest for life was impossible to miss. Jimmy talked about his childhood and I heard him describing my sullen little boy. To see the "grown-up" Jimmy living his life to its fullest and with such joy was indescribable. The beautiful and talented Jessica gave us the same inspiration from a slightly younger female perspective. And James brought us his beautiful film, "The Night Before", which brought tears to my eyes - and most other viewers' as well. I enjoyed several opportunities to speak with James about his life, his film and about my child - and I will never forget those moments.

The time I spent with other parents was perhaps the most important for me. For the first time since my son was born, I felt like people understood what I've been suffering all this time. I met other mothers and fathers who shared the guilt that is irrational, yet ever-present. Some of us carry a sadness and sense of isolation that is profound, but we felt relief together. We face the same challenges, the same questions, the same fears and doubts. We all adore our kids and want the best for them. And along with the occasional tears, our children bring us tremendous joy. I wish that all families living with bladder exstrophy could have been there. I wish I could have gone sooner!

On having a son or daughter with exstrophy...

What was it like to find out that your child had exstrophy? What are your hopes for your son or daughter?

When I grow up...

What do you want to be when you grow up? How do you want to live?

On going to the doctor...

How do you feel about doctors. If you could tell your doctors anything you wanted, what would you tell them?

On having a brother or sister with exstrophy...

If you have a brother or sister with bladder exstrophy or another disorder, what is it like for you?

From the kids with exstrophy...

Who are you? What is it like to be you from day to day?