The 2010 HEA Walk in Illinois
I wanted to spend a moment to recap a wonderful event that took place on both coasts and here in the heartland on Saturday, May 1. I can only speak about the walk held at Kankakee River State Park in Bourbonnais, Illinois.
I left the house at 7 a.m. to make sure to fill up and get my friend Patty, who thoughtfully accepted the challenge of walking with the group and navigating the drive. Let’s just say that MapQuest was not as accurate as I would have liked. Some of the roads were not marked, but we managed to arrive just before 10 a.m. to meet our wonderful host, Amanda, and her family. They were waiting with a young mother from Grand Rapids, Michigan. Another family arrived shortly afterward.
Jonah, Brian, Emelia, and Gabe
The walk was a little over 5 kilometers long, and Amanda’s husband, Brian, kept the group focused on the goal, leading with his daughter in a Radio Flyer wagon. I was able to supply lime-green shirts with blue printing which were mostly put on before the walk. The trail was paved and meandered beside the river through hills, with bridges, and with streams running over rock walls. We had been concerned about the weather, but the rain had passed earlier in the morning, leaving a nice, partly sunny walk with a refreshing breeze.
From the time people arrived at the walk, parents were sharing their stories about their children and had a venue to talk openly about their successes and concerns regarding the health of their children. They also spoke of resilience and family strength. One young man had undergone six surgeries for his epispadias. Another youth had bladder exstrophy. A year-old boy had unrepaired hypospadias, and his mother expressed her concerns about dealing with medical professionals regarding possible surgery.
As we reached the halfway mark, we took a break, with snacks provided by Amanda. Apples, bananas, peanut butter crackers, granola bars, water, and juice boxes. What an organizer. Another HEA Supermom! I spoke with one of the fathers on the return. He discussed the challenges, isolation, and unavailability of others outside the medical community to speak with regarding his son’s condition. We shared wonderful talks about all of his children. I discussed growing up during a time when a family was told to keep hypospadias or epispadias a secret and never to talk about it. I think I met three young men who will never have to deal with being a family secret.
As the walk drew to an end, the group moved to a play area for lunch. The earlier snacks were just foreshadowing. A wonderful spread of a variety of homemade sub sandwiches, chips, and condiments was presented by our organizer. More shirts were given out. More food was consumed, and it was a great time for relaxing and watching the kids, who showed no signs of tiring.
Before the ensuing food coma, I conducted unofficial business regarding upcoming HEA activities. This included our October conference to be held in San Antonio, Texas. We also discussed the possibility of communicating with others in the area and meeting for pizza in the near future. I also spoke of my young, brave friend Keyan, who was healing from bladder exstrophy surgery the previous week. Then, out of the blue…one of the fathers pulled out his phone with pride and proceeded to play a song his son had performed in the shower. I may have to get a copy. “Me and my bladder exstrophy…” I know, you had to have been there. But hey—he sang great, and it rhymed!
Shortly after 1 p.m., my sidekick Patty and I said our good-byes and started our 100-mile drive back to the opposite side of the Chicago area. It went much faster this time. As my friend Franci would say, “Get a Garmin!” To which I would have to reply, “I got one for Christmas, and it’s still in the box!” Patty is much better company than a GPS receiver!
As I reflected on the day’s unfolding, the important thing that I learned was that not everyone can afford to go to a conference, especially in these times. Many people go to a website for information and validation that they are not alone. But if a simple opportunity is made available for people to unite locally, to share openly in a safe environment, and to meet others and feel a sense of community, if only for a few short hours, I believe we have a new “Priceless.”
Last year I walked 10 miles in order to raise funds for HEAinfo.org. It was a very good initial success and raised funds for the website’s maintenance. This year there was interest from other members to get involved, and thus evolved walks in New York City; St. Augustine, Florida; Vancouver, British Columbia; and here in the Chicago area. One of our goals is awareness. I thank Dr. Tiger Devore for his recent National Geographic Channel special, “Sex, Lies, and Gender” as well as his recent appearance with the vivacious Ms. Betsy Morgan (host of the St. Augustine walk) on The Dr. Oz Show. I could spend a lot of time thanking people, including you because you have in one way or another participated in my healing. So, thank you!
My new goal will be community in order for more local families to have a place to meet and share. I promise to have only one walk a year asking for your support, followed by a community awareness walk. But I have a feeling there will be several more group walk venues next year! Again, thank you for supporting me on my recent walks for HEA.
(left) Jim Lake and friend at last year's Chicago walk.
(right) Wonder Woman showed up for this year's NYC Walk.
Cherise O'Kennedy, organizer of the 2010 HEA Walk in beautiful Vancouver.
Participants in the HEA Walk in St. Augustine, Florida,
organized by Betsy Morgan (above, right).
Billy and Betty came out for the HEA Walk in New York City.