CCVI Trolley Run - 31st Annual - #teambeauSunday, April 28, 2019 in Kansas City, MO at 75th and Wornall Road - Sunday, April 28
Sometimes people will ask me, "What is #teambeau"? When Beau was only a few days old, our favorite NICU nurse came in our little curtained off area to check on us and as she left she put her fists up and said, "Team Beau"! From there, I hashtagged the phrase and used social media to give friends and family updates on Beau as he graduated from the NICU and began a long year of poking, prodding, testing, hospital visits and seeing specialists to try to figure out why Beau wasn't hitting his milestones. Beau's first diagnosis was Duane's Syndrome. This diagnosis meant Beau would not be able to turn his left eye out. There is no treatment or cure. Grant and I were sad, scared he would be bullied and I was pretty disappointed he wouldn't be able to hit a baseball right handed. However, after such a scary first few weeks of his life, this was just a bump in the road and I was on a mission to find him the very best specialists and therapists to help him be his best.
It was around this time that Beau's pediatrician asked if I had ever heard of CCVI. Like most people, I hadn't, but she suggested I call them and talk to them about my resource options. CCVI evaluated Beau both at home and in a classroom and soon we began music classes, playgroups and water therapy with the teachers and therapists at CCVI. We were also connected to and began working with a CCVI physical therapist who has since become a part of our family. If you follow Beau, you know exactly who Ms. Margaret is! With Margaret, Beau began to make gains, but was still far behind his peers and we still had not answers.
When Beau was 9 months old, I got the call from a genetic counselor at Children's Mercy Hospital with the results of his exome sequencing evaluation. I grabbed a pen and paper and wrote "GNAO1". After talking to the counselor for a few minutes about Beau's prognosis, I got a lot of, "We're not sure". She scheduled a follow up appointment in a few weeks and said she'd send over some research papers that had been written about the effects of GNAO1. I asked her what I was supposed to do now? "Should I Google?" I asked. "We don't suggest you get on Google," she replied. I googled. I didn't find much but seeing as at the time there were only about 50 people diagnosed, there wasn't much to find. However, what I did read and see was absolutely horrifying. As a parent, think of your very worst nightmare. That nightmare was GNAO1.
Our family and Beau's future was and still is very much unknown. We are scared, angry and often feel alone. It's difficult watching other kids Beau's age achieving so much while we fight every day for a small piece of normalcy.
Beau now attends CCVI for preschool where Grant and I serve as Parent Group Presidents. CCVI has provided a safe place for our family. The staff understands and loves Beau. He receives the very best care, therapy and opportunities to learn. I took a picture (above) of Beau in the hall after a fall afternoon at CCVI. It will forever be one of my favorite memories. I walked into Beau's classroom only to find that he wasn't with his class eating snack. I thought he was still working with his therapist, however his teachers said he was "getting milk for his friends to drink with their snack. A minute later, Beau was rolled in with a pitcher of milk, holding two branches of leaves in his tiny hands. His teachers explained that they had gone on a nature walk and he collected leaves.
This was the very first time in Beau's entire life, I felt like just another parent. When you have a child with special needs, the overwhelming thoughts of how your life is filled with obstacles that other families don't even have to think about run through your mind all day, every day. That day Beau didn't have obstacles. Beau went outside with his friends at school. Beau was the calendar helper and went down the hall to get milk for his friends. Beau was just like any other 2-year-old going to preschool. He held those branches the entire 30-minute drive home. Those leaves are framed and hung in a hallway in our house. Something so small that is taken for granted by so many has made such a huge impact on our lives.
To me, #teambeau is the staff of CCVI, making every day as positive, fun and filled with learning. #teambeau ALL the therapists that have joined the team. We have the very best of the best. We kissed some frogs in order to find the royalty that is our team! #teambeau is our nannies, our friends, our family, anyone who has said a prayer for Beau, sent a donation to the Bow Foundation, worn a #teambeau bracelet, pom pom hat or t-shirt, attended our Beau Night softball game, sent a gift card, helped us buy a Veer Wagon, sent a note, email or text. #teambeau is you and my goodness #teambeau is mighty!! Thank you for joining the team. What you do makes such a huge impact on our family's lives. We are thankful for each and every one of you!
Contributors on Behalf of #teambeau
- Peggy Hess - Make a Donation
- Mia and Mackenzie Hammond - Make a Donation
- Cody Plummer - Make a Donation
- Chris Scott - Make a Donation
- Debbie Apple - Make a Donation
- Billy Neff - Make a Donation
- Crown Town Painting - Make a Donation
- Annie Muckenthaler - Make a Donation
- Eric Martin - Make a Donation
- Shelby Leiker - Make a Donation
- Diana Korte - Make a Donation
- Courtney Hallenbeck - Make a Donation
- Susan Anderson - Make a Donation
- CHRIS & NICOLE Corsair - Make a Donation
- Douglas Hash - Make a Donation
- Glenda Long - Make a Donation
- Mike & Linda Hash - Make a Donation
- Sandy & Arlyn Burns - Make a Donation
- Chad & Tracy Dague - Make a Donation
- Sara Pyrant - Make a Donation
- Barbara Smith - Make a Donation
- Megan Palen - Make a Donation
- David Berthiaume - Make a Donation
- Jason Brunk - Make a Donation
- Krishna Rudraraju - Make a Donation
- Heather Hering - Children's Center for the Visually Impaired Family Team Member
- Jason Yeager, Lindsey Yeager - Children's Center for the Visually Impaired Family Team Member
- Eric Phillips, Alyssa Phillips - Children's Center for the Visually Impaired Family Team Member
- Janene Thibault, Kaylee Boyle - Children's Center for the Visually Impaired Family Team Member
- Carol LeVar, Sam LeVar - Children's Center for the Visually Impaired Family Team Member
- Anne LeVar-Hash - Children's Center for the Visually Impaired Family Team Member
- Grant Hash - Children's Center for the Visually Impaired Family Team Member
- Ryan Rose - Children's Center for the Visually Impaired Family Team Member
- Kristen Potter - Children's Center for the Visually Impaired Family Team Member
- Ali Brous - Children's Center for the Visually Impaired Family Team Member
- Mark Mahoney - Children's Center for the Visually Impaired Family Team Member
- Ellie McDaniel - Kids' Trolley Run (ages 10 and under)
- Aaron Sloup, Madelyn Sloup - Children's Center for the Visually Impaired Family Team Member
- Cathy Phillips, Libby Phillips, Caitlin Phillips, Tom Heck - Children's Center for the Visually Impaired Family Team Member
- Rae McDaniel, Jeff McDaniel - Children's Center for the Visually Impaired Family Team Member
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