WAGR weekend was not an easy event for us to attend. In the past we’ve had other obligations on the same weekend, and this year we had obligations the surrounding weekends. But, with all that we’ve been through with the group in the past three years, we were determined to make the weekend happen for our family.
I had anticipated crying. A lot of crying. I was surprised though, because I didn’t have the shock of meeting everyone that I expected. Rather, I felt as though it was more of a reunion than a first meeting. I suppose with all the good days and bad days I’ve shared over the internet with everyone, you are more of a family to me than some of my other family.
Jeff and I both shared in the same joy, watching Evie play with other kids. I sat and watched Nicholas and Jenna do their stand up routine with the microphone and Evie and Hayden play with the jumbo legos and I felt like I was in heaven. Evie may not have noticed the difference, but I did. Almost more than seeing Evie play with other kids with WAGR, I enjoyed watching her play with the siblings of the kids with WAGR. Maddie, Hayden’s brother, adopted Evie like her own kid sister. The peace of knowing that Maddie accepted Evie the way she accepts her brother delighted my soul. I appreciated that I didn’t feel monitored. Sometimes, even with friends or family at home, when I want Evie to take a nap, people will press and say, “Oh, she’s fine.” Okay, at that moment she’s fine, but she doesn’t always know when she needs a nap. At WAGR weekend, we understood, “Hey, when the kid needs some time away, the kid needs time away!” Nobody said, “Don’t make her take a nap, how often does she get to see these people?” Wait, I take that back, Mr. Dreamy Dalton was really pressuring me to wake my daughter up from her nap so she could play, but I think he does that with all the girls.
Coming home from WAGR weekend was more of a culture shock than going to WAGR weekend. Suddenly, my skin felt a little tighter (maybe because I ate so well), and the air seemed a little heavier because my cyber family was once again only reachable through the keyboards and computer screens. But each one of them is here in my heart, and within a stroke of the keys.
Written by: Tammie Hefty
Our WAGR Weekend 2007 Memories
Caroline Larson:“I loved being there and meeting all the families and walking around taking pictures with my new camera. Talking with Dr Han and Rebecca seeing Carolyn again was so exciting. I can’t wait to go back to the NIH. The first visit there was okay, but I was so nervous about what would happen. Now I know there’s nothing to worry about, so I can relax and just enjoy it. Becky (Deas) and Irma (Luis) and I sat together and watched Ethan playing. He is so cute! I wonder how much I was like him when I was little.
Taking pictures gave me a chance to talk to everyone. Like they say, photographs are worth a thousand words. And the memories – the memories will last a lifetime!”
Laura Trout: “I enjoyed talking with Michelle Meyer, she was so nice, and little Johanna is just adorable. Helen Lane and I talked about school – of course! She was really kind. Kristine Canavan (Liam’s mom) and I were having a nice conversation when my mother spilled a coke all over the table and her keys!
Maddy (Hayden’s big sister) and I walked around the hotel together. She is so sweet; she had cut out stickers and gave them as presents to everyone. And I’ll always remember Nathan (Tunis) speaking French!”
Kelly Trout: I think if I had my way, WAGR Weekends would be WAGR Weeks. The time we have together is always so short, and that makes each moment very precious. Every WW we’ve ever had has been magic, and this one was no exception. The presentations by Dr. Han and Ms. Ana Morales were terrific, of course. But as I watched them, I couldn’t help feeling completely awed by the fact that these research projects are even happening. They are quite literally dreams come true. One of my favorite things is seeing friends who’ve come to previous WWs, and marveling at how much the kids have grown and changed.
But one of the sweetest things about this and every WW is meeting families who are new to the group, and watching them realize that they and their child have found a safe and very loving haven. It’s pure joy to know that next year, these “new” folks will be old friends, too.
We get very excited when July comes around because we know at the end of the month we will be seeing our wonderful WAGR family. I think the thing we like most about the weekend is that we just feel plain ‘ole comfortable there. We have no one to explain anything too. Everyone there just “gets it”. If your kid is having a meltdown, being a slob while eating, or doing the quirky things that they all do, it’s okay. No one will judge you. No one will stare at you. No one will whisper to the person beside them about you.
Being there just gives you a peaceful feeling. An “I’m not alone” feeling and boy do I love that feeling. Thank you everyone for a great weekend and giving me that feeling. I am proud to call all of you “My Family!”
Julie Dell, mom to Hayden 4 yrs old WAGR
It was great to meet everyone at WAGR Weekend. It was our (Amy,12, and my husband Jim and I) first time meeting everyone and attending the “Weekend”. I was overwhelmed with the kindness and kinship and am still recovering from the thought that I am not alone out there trying to figure things out.
It has been (and I am sure will continue to be) a long road and with a diagnosis finally of WAGR in Nov 06, I am still learning and researching. While I was familiar with the information presented by Joan and Ana it was interesting to see in the graphic forms and to be in a room full of people who has the same interests and dear children like me. I plan to visit the website and links to additional information as time permits, especially things dealing with medications for the ADHD piece. We have tried many different drugs with some success, but I am sure WAGR parents can help sort out some other info that we have not had access to.
My feedback about the “weekend” was that we attended Saturday (we live 45 miles from Manassas) and I was thrilled with the very warm, kind, and loving welcome of everyone. Just wish I had found you all a long time ago.
Written by: Shari Krantz