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

Monday, January 11, 2010

What a Great Night!!!

We had the pleasure of attending the Kevin Sharp Concert that benefitted the Make A Wish Foundation this past weekend. You may remember last year at this event Hayden went up on stage and helped sing "Row, Row, Row Your Boat." This year we were asked to put a video together about Hayden's Make A Wish (MAW) Trip to show people how MAW helps families when they are going through some difficult times. How it helps you forget about doctors and medicine and all your worries and how it helps families to just be normal without a care in the world. After Kevin's AMAZING show (He's so funny and down to earth), Kevin called Hayden and Maddie up on stage and talked to Hayd a bit then they showed our video. After the show Kevin was signing autographs. We waited til the end because we knew Hayd would want to "hang out" for awhile (the social butterfly that he is!) It turned into quite a fun and hilarious time. Hayden even gave Kevin an autograph of his own. He also had his own photoshoot with Hayd being the photographer and Kevin being the one being photographed. Hayden was so funny and I caught some of it on tape. Here is some video clips of the night. It's about 9 1/2 minutes long....make sure you watch til the end. Hayden had Kevin sign the tablecloth and asked why he scribbles so then Hayden signed the tablecloth too.

These are the pics Hayden took. He did great on the last one....even held the camera sideways!

We had a fabulous night and we can't wait until the MAW Truck Convoy in May. They are having a whole weekend of events that we are hoping to participate in. Thank You Sherri from MAW for organizing a terrific event and Thank You Kevin, Dan and John for putting on another fantastic show and most of all for making our little hero smile!!!!

Monday, November 23, 2009

Jax at Preschool

The other day Jax had a field trip at preschool. Before we left the kids showed the parents their morning routine.
First we made a craft.....Froot Loop necklaces.
Then the calendar and The Pledge Of Allegiance. Jaxon's job for the day was to be the flag holder.
He looks so thrilled, doesn't he?
Then they sang some of their Thanksgiving songs for us. Sooo cute!!
Here's a video of the Pledge. Jaxon wasn't saying it, but he knows all the words and says it at home all the time. I'll try to catch it on video.....it's adorable!

Wednesday, November 18, 2009

Skating for Wishes

Sunday night we enjoyed a night of Skating. All proceeds went to the Truck Convoy For Wishes. The kids had a blast....mom and dad had fun too! Maddie's name got drawn and she won a special Webkinz. Hayden got a Gift Card for a yummy pizza place for doing so well at the Hokey Pokey. We also recieved a special gift that we totally were not expecting from a special lady. Her name got drawn for the ipod Nano they were giving away and she didn't want it. She offered it to us! How sweet was that?! We have been truly blessed by being part of the Make A Wish Foundation. Not just by the things we have recieved but by the selfless people we have met through it. Our lives are forever changed and for that we are grateful!
Jax learning the ropes
Maddie, looking like a pro
Me & Hayd
Big Bird & Elmo even came for a visit....even on skates!
Hayd did great....this was him by the end of the night. Taking a break
Here's a video of the night...enjoy!

Wednesday, October 28, 2009

My Dear and Her Deer

Hunting season is in full swing and this year with the PA Mentor Program Brian decided to take Maddie out on her first deer hunt. Maddie got her own crossbow and practiced through the summer. She seems to be a natural as her aim is quiet good! She may even show her dad up!

Brian showing Maddie the ropes as they venture out on their first hunt!

Of course she had to bring along the DS to pass the time!

View through the scope

Getting ready.

On their first few hunts they saw a good bit of deer, but none were in shooting range and most were doe. The rules say Maddie can only shoot a buck, so they were just waiting for that perfect moment and perfect shot.

Maddie out on her third hunt. Gotta love the pink boots! It was pretty chilly out and the only thing she had to wear were the boots. We laughed as she came down the steps. You will never be able to take the "Girl" out of Maddie.

Practicing her aim.

The blind Brian and Maddie built before the hunt. Little did they know that this was the night......

that Maddie......

would aim......


and SCORE!!!!!!!!!

Maddie and her first buck!!!!!!!! She made the perfect shot!!!!!!

Proud Maddie and her Dad!!!!!!!

I didn't believe her when she called and told me she got one. How excitng! The local newspaper even did an article on her that ran on the front page of the sports section. We are so proud of her. She credits it all to the pink boots. They are now her lucky boots!