Tuesday, July 27, 2010

WAGR Weekend 2010

This past weekend we had the pleasure of attending WAGR Weekend in Gaithersburg Maryland. This is a weekend that we, as a family, look forward to every year. As the anticipation of the weekend approaches I get that "butterflies in the stomach", excited feeling!
This is such a special thing for us to do every year, to be with people who "get" us, who "get" our child. These people are just like us. We all reveled in the excitement of the birth of our child. We all were devastated to learn something was wrong with that child. We all felt lost, helpless and fearful. We all went to the internet to find something, anything on our child's diagnosis. We all became connected. We all became a family. We all understand each other. We are all one.

One thing that really gets to me is the excitement in Maddie's eyes as we tell her today is the day we leave for WW (WAGR Weekend). She absolutely loves going. I love to watch her with the other kids. Not just the other siblings, but to watch her with the other children who are just like her brother. She knows Hayden and the other kids have a disability, but she could care less. She even knows how to talk to them to help them calm down from an anxiety attack or to just get them to do something as simple as take a picture. I love that this weekend means as much to her as it does to us.
On to the weekend.....We arrived in MD on Friday afternoon to be greeted by many of the families that have already gotten there in the lobby. As we check in the overwhelming feeling of comfort surrounds me. It's like my mind and body said, "Ahhhhhh!"

At 6:00 we have the "Meet and Greet". It's a time for us to reconnect with everyone. A time to get a ton of hugs from not only the parents but from the kids too. That's one thing I love, the kids are all so friendly and they remember everyone. The one thing I will always treasure is when Sweet Evie Jo saw me and said, "Juuuulie!" and gave me the biggest, best hug ever! Love, love, love that girl!!
Shari, who hosted the event, also had a birthday cake for some of the July birthday's, Hayden being one of them. He turned the big 7 on Friday! Thanks for doing that Shari!
Friday night was one of my favorite times...Mom's Night Out! This time goes waaay tooo faaast!! Just the moms talk and share stories and lessons learned. It is a very fun, interesting and emotional time. We never seem to get everything in that we want to say. I personally am hoping for the future to have a "mom's day", but I still don't think that would be enough time to spend with these amazing women!
Saturday was filled with Presentations from our Health Consultant and from Doctors from the NIH. It was so interesting to hear what the NIH is doing and how far they have come since they started the WAGR Study. Hayden is enrolled in the study but we haven't gotten to the 2nd phase of it yet for him. This requires a stay at the NIH which we will hopefully do soon, we just have to coordinate babysitters for the other kids so Brian and I both can be there with Hayden.
While the parents sat in conference the kids enjoyed some fun times in the gym. A BIG THANK YOU to the volunteers including my sister for hanging out with the kids. They had a great time!
Tammie made life size candyland. The kids loved it!
Saturday afternoon we took advantage of the great park WW was held out. The kids had a blast at the water park although it was a steamy 100+ degrees outside and the water felt like bath water!
Saturday Night was the WW pizza party. We enjoyed some yummy salads and pizza and some more bonding time, or shall I say picture time!
Me and my Jerzee girls!
Tammie and I with our annual picture
Me and Jenny, who flew in from England
Shari, Me and Tom
Elizabeth and Me

Hayden and his best bud Jacob
Nick and Hayden
Casey, Hayden and Wesley, aka "Hayd's coaches"

Aydin and Maddie

My Mom and Dad
The Dell-5, my parents, my sister Nikki and niece Kayla (notice Jax and his tongue)
We were sad to see the weekend come to an end. I wish this could be a week long event. Actually I wish I could gather everyone up and we could all live in our own little part of the world. Our WAGR Family is something that we treasure deeply. Hayden would not be where he is today without the help of the IWSA and all of the other mothers and fathers that rode this journey before us. We are forever grateful for this organization, which just started out as a few mothers connecting via the internet comparing notes on their kids that had the same diagnosis. The IWSA has now grown into a wonderful organization that I am honored to be a part of and I can't wait to see what the future holds. I KNOW great things will happen. After all doesn't WAGR stand for Winning Attitudes Great Rewards?!

Hayden and his Evie Jo