Why does this blog exist?

As the parent of a child with bladder exstrophy, I've spent the better part of the last 9 years either managing my son's medical treatment and surgeries or trying my best to make sure my family and my son live "normal" lives. Our normal may be different from another family's, but we do the best we can.

Until my son was about 4 years old, we had no contact with anyone else with bladder exstrophy or any other similar disorder. At that time, we were preparing for another surgery and I was desperate for more information than I was getting from our doctors. While researching on-line, I discovered the Association for the Bladder Exstrophy Community, or the ABC. This organization and its website became a lifeline for me. I hadn't realized how hungry I was for information and support until I found it.

I joined the group and submitted our contact information to be included in the organization's directory. During the next year, an expectant mother of a boy like my own found me using this directory. She contacted me looking for support and I did my best to provide it. I tried to offer her hope and show her that her son could grow up to be as active and happy as any other boy by introducing her to mine. I felt as if I was finally given an opportunity to use my experiences in a positive way. And although I was supposed to be helping her, in this way, she was helping me.

So far during my son's life, I have agonized over the medical decisions I have made on his behalf. I have used up enormous reserves of energy worrying about his emotional, educational and social development. In that respect, I'm sure I'm no different from most parents, whether or not their children have medical problems. But when your child's condition is uncommon enough that most people have never heard of it, this can make you feel as if your situation is so different from others that nobody else will understand. When I think of how alienated and alone I have felt over the years, I can only imagine how it must feel to be the child with the disorder.

I believe that, over all, I've made good medical decisions and I've done as much as any parent could do to support my son's emotional health and educational opportunities. I think that what I'm doing now, by trying to find a community of others who have lived as he has lived, will be one of the most important things I will ever do for him. Next week I will be taking my son and his little sister to a conference in Seattle that is sponsored by the ABC. He will meet face to face with other children and families living with bladder exstrophy. He will get to meet them, talk with them, play with them, and learn with them. I am so excited for him I'm near tears whenever I think of it. I'm a woman who isn't very prone to excitement so this is highly unusual for me. This is an extremely emotional experience - and we aren't even there yet.

I have finally realized how badly my son needs to know that there are other kids that are just like him. We are making this trip to give him that connection. I don't know how to express how much this means to our family. I wonder if the other parents and kids in attendance at this conference will feel the same as we do. I wonder about the many more parents and kids who can't make the trip. I wonder how they find support. I wonder if they need it in the same way that we do. They can certainly find support on-line like I did in the beginning. Maybe they can find a little here.

Eventually, I hope to be able to gather the stories and comments of other exstrophy kids and families and to compile those stories into a book. I'm a book person. I love to touch them and hold them in my hands. I would find it comforting to be able to browse a book full of the experiences of others and their stories of hope. My son likes the idea too. I'm planning to create a book like this for him. I hope it interests and comforts others as well.

This blog may be structured a little different than others. I will be posting to the blog, sometimes with a question, sometimes with an issue that I think is important to other families like ours. I will invite comments and I hope that you will contribute your own stories. If you have children who would like to contribute, they can tell their story here, in their own words or with your help.

As I start this blog, I don't know if it will achieve the ends I'm hoping for. I will wait and see how it goes. I'm thinking about that young, scared, expectant mom that I met just a couple of years ago. I'm remembering my own devastation when I gave birth to my beautiful baby boy and first learned that he had a disorder that I had never heard of. In truth, I'm thinking mostly of my own son and his need to share his experiences and to share in the experiences of others. I do hope to help us all through this project.