The First WAGR Weekend for this West Coast Family
by Mary Hampton
In July, we attended our very FIRST WAGR Weekend. Adyson is 10 years old and we’d never had the opportunity to attend before. We are from Washington, and with WAGR Weekend being on the west coast for the first time, we decided we needed to find a way to make it happen. We were excited to meet other families who could relate to ours. Adyson had never met another kiddo with WAGR who had been through what she had.
Along with all of the excitement, came some apprehension. We didn’t know what to expect, we didn’t know how Adyson would feel. As many of you know, WAGR is vastly different from one case to the next. With the exception of Braille and reading class at school, she is in general education. By nature she is a kiddo who likes to fit in with the crowd, she doesn’t want to be considered different. On an average day, her WAGR is “invisible” to most people. Our concern was that she would see what it’s like for other kids, and might develop insecurities. We have always taught her that WAGR is just a small piece of her, but that it doesn’t define her, nor does it(or any disease, syndrome or disorder) define any other child or adult born with it. Looking back now, I can see how absolutely silly my concern was. If you have ever had doubts about attending WAGR Weekend, GO!!!!! Adyson blossomed in her adoration of a few of the younger girls who she met with WAGR. (She LOVES babies) It was an environment where everyone was accepted for who they are, no questions, bottom line. We felt absolutely loved and absolutely accepted by every single person we met.
As parents so many things stuck out for us. Adyson’s mom (Kym) and I (Bonus Mom, Mary), attended Mom’s night out together. Hearing what other moms have been through, knowing (in the flesh) that we weren’t alone; was so calming and absolutely freeing. You never know how isolating something like this can be, until you don’t feel isolated anymore. Kym and I have talked several times since being back- it was like meeting our family for the first time. People we have followed via Facebook or even personally contacted; people we have admired, looked up to and bounced questions off of, actually coming to life, right before our eyes. THAT was so exciting. I was prepared for an emotional weekend. I wasn’t sure if I would feel somber, or sad, or overwhelmed. And it WAS an emotional weekend, I did cry once or twice. But not from the reasons I thought I might. It was from absolute JOY and a huge weight and burden being lifted from our shoulders in the comfort and wisdom that others provided.
For my husband (Ron, Adyson’s dad), I was nervous. He is a very quiet person by nature, never really expressing his feelings about Adyson and WAGR with others (especially other men). Kym and I assumed that he would go to Dad’s night and would listen to other dads talk. Then maybe he’d talk about sports and have a beer. He surprised me. He returned to the room when it was over and told me that he did speak in front of everyone. He told Adyson’s story, explaining everything she’d been through and the double stem cell transplant we’re considering in the future. It was SO good for him to be able to speak with men as peers about everything; he knew they’d understand because they all share a similar story. It was a weekend we will never forget. The IWSA is incredible for putting this on. We made friendships and memories that will last a lifetime. We hope to attend as often as possible!
Kym Hillman, Mary Hampton, Ronnie Hampton