Friday, May 20, 2011

May 14, 2011 - Dream on Wings meetup

Every year on this weekend, for the last couple years, the hemispherectomy foundation has their walk to raise money. As a veteran "hemi mom" I thought that I would invite some folks from around the state to my house. It really looked like the weather wouldn't cooperate, so we all signed up as virtual runners but met at my house and ate instead.


There were the six of us, my mom, and sister. (The above is the whole crew shot)

Then there were the Brights. They live in the upstate of SC and hadn't met another hemi family before. Their girls were absolutely charming, and while they listened to all of us, my family actually watched their daughter "M". My mom thought that she was so similar to Blondie that it was like seeing what Blondie may be as a teen. All of their daughters were perfectly behaved and absolutely delightful.

The Hardy's came, Melissa, her daughters "A" and "H" and her infant son, as well as her mom, and sister. Those little girls were the CUTEST THINGS EVER. "A" never stopped talking, and was constantly asking very intelligent questions.

Robert and his mom Janet showed up (I'll use Robert's real name because he is an adult). This was the first hemi family I ever met, and it was so good to meet up with an adult who was successful. Robert just finished his Master's degree in Social Work and is job hunting. He lives on his own, and is doing everything I hope our daughter is able to do. He has a fantastic sense of humor, and an obviously close family.

All of the younger kids played and wandered in and out as the older folks chatted and got to know each other. It was nice to have such a range of ages: Rober (25), "M" (14), Blondie (9) and "A" (almost 5) to share our experiences, show off new braces, and just get to support each other. When your child has a rare disease then distance from others in a similar situation is a big hurdle. It isn't like have cancer and speaking in a support group. That is why the hemi foundation ( is so important to families like ours. It brings us all together from around the world to support each other.

Through the foundation, that very same day, we learned of an older boy who was having a "redo." After the surgery, Eric Suzuki, had a massive seizure which severely damaged his brain. As we were celebrating other families, we were also VERY aware that one of our own families was saying goodbye to their wonderful son. Kelli, and Mike, are both very involved with the group and offered advice and support to others. This past Wednesday he was laid to rest. On his carepage, his father wrote: " Probably the most important reason that Eric was able to achieve all that he did, was because of all the love and care that Kelli, his mother, my wife, provided him. Because Eric was able to do so many things most people do not realize Kelli spent hours each day attending to his medical needs, getting him therapy, researching for better ways to care for him. & advocating for him to get the services he needed. She did this day after day, month after month, year after year, while at the same time being a great mother to Kaitlin and Emily. I know that Eric could not have had a better mother than Kelli, and she has my love and admiration for everything she did to make Eric the wonderful young man that we all new.

But more than just being thankful for the time we spent with Eric, we can all be inspired by how he lived his life. Even with his challenges, Eric did not sit around feeling sorry for himself. He just went out and to the best of his ability, did the things that came easily for most other kids. He didn't want people pitying him & had no time for people that wallowed in their own sorrow.

He just wanted people to treat him like any other kid, and be included in all of life's activities."

This totally and completely encapsulates what the hemi foundation means to me. As parents we can gather to find the best options for our children, supporting each other in new research efforts, and help others know how we included our own children in life's activities. The Suzuki family is in my thoughts and prayers daily.

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