Sunday, November 4, 2007
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...
Saturday, August 18, 2007
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!
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!
Wednesday, August 8, 2007
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?
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?
Wednesday, July 25, 2007
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.
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.
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