A Grandma’s View
Getting to know those I had just seen and heard about on the internet was worth the trip from Washington! Although Wes has the start of kidney disease he has not had Wilms’ tumor so all of you are my heroes. Your trials and triumphs you have been through have been both heart wrenching and heart enlightening to me.
It was especially wonderful for Wes to get together with some other teenagers like Nicholas, Amy and Alex. Teenage years are not easy for anyone, especially a child with special needs!
Wesley is so loved at his high school and we don’t go anywhere that someone doesn’t come up and say “hi Wes.” However it isn’t the same as having that special someone to go hang out with.
Thank you Amy, Alex and Nicholas for making his trip so fun. To Shari, Rhonda and Annie who share the everyday challenges that I share I think of you often. I start to tear up just thinking of the hugs, smiles and wonderful conversations with Irma and Caroline. Catherine and Kelly have been my inspiration since I met them eleven years ago when they welcomed me to my first WAGR weekend and forever will stay in my heart. There are many I didn’t feel I got to really know but at least now I can put a face to the names I see on the internet. Thanks to all who opened up their hearts and let us in!
A big hug and thank you to the Prusakiewicz family for making all this possible by hosting WAGR WEEKEND 2011!
by Grandma Bev Schmer, Washington
Traveling to my First WAGR Weekend
My experience at WAGR Weekend was fun. It was different this year for me because I got to travel instead of our family being the hosts. My mom and I flew from Wadhington, DC to Detroit, Michigan. Annie P and her family live there and were the hosts and they did an awesome job of planning all the activities that were so much fun.
When I first got to the hotel, the boys were all really happy to see me. Alex, Wes, and Nick were all waiting for me at the pool. Kelly Trout said if she had a penny for everytime they asked, “when is Amy going to get here?” she would be a rich woman!
I really liked staying in the hotel and enjoyed having my friend Alex Sena staying down the hall from me because I only get to see him once a year. The food in the restaurant was very good and it was fun on the day of the board meeting because Alex and I got to eat in the restaurant by ourselves.
I thought it was really cool that we got to meet Hooper, the mascot for the Detroit Pistons, on Friday at the Meet and Greet. All of the kids enjoyed that! I also thought it was really fun to all go bowling. It was so cool how the bowling alley was designed and a fun afternoon spending time with everybody. I liked the pool at the hotel too and gave me a chance to spend time with Alex from New Mexico and Wesley from Washington State. I also enjoyed spending time with my two older girlfriends, Irma from New Jersey and Caroline from Texas. Kelly Trout, Caroline’s mom, calls us the “triplets”! It is neat to hang out together and talk about what’s going on in the world. We all get along really well because we all have the same personalities.
I wish I could travel to WAGR Weekend every year because it is more fun when you travel to see everyone! I hope everyone will come to Maryland again next year for WAGR Weekend!
by Amy Marshall
(16 yrs old with WAGR)
A Few Things I Learned at WW2011
- “Cosmic Bowling” means that the bowling alley is dark, with fun lights everywhere, and the bowling balls actually glow. Kids with WAGR *LOVE* Cosmic Bowling. Possibly because they’re much better at it than their parents.
- Contrary to what you might think, magic shows are not lost on our kids. Even when they can’t see the details of a trick, they’re delighted anyway. Must be magic!
- Grandparents, Aunts, Cousins, Siblings, and Friends who come to WAGR Weekend just don’t get it. They don’t understand how extraordinary they are. How impossible it is to express how much it means to us that they are there. We hope they’ll figure it out eventually, because they’re a permanent part of the IWSA family now.
- Start training for WAGR Weekend early in the year. Put plenty of sleep in the sleep bank so you can make several big withdrawals, exercise your vocal cords so you can talk nonstop, drain your tear ducts so they won’t constantly overflow, and build up your abs so they can withstand prolonged laughter. All the work is worth it, though. There’s no high like a WAGR Weekend high!
by Kelly Trout, Texas
Irma, Amy and Caroline
Caroline & Kelly
Winning Attitudes, Great Rewards
OUR FIRST WAGR WEEKEND
Chuck: For me, the most enjoyable and positive experience I had during the WAGR weekend was to meet with the dads and grandfathers. It was really great to be able to share in depth about experiences with our children and the challenges that our children have and what they and we have gone through. It was very helpful to hear the other guys thoughts and feelings also. It helped me to feel like my experience made sense to them and that their experience resonated with mine. I also really liked being able to talk with some of the kids and to have them become interesting and fun real people and not just faces in a photograph.
Mary: What I found most remarkable and moving was that many kids were accompanied not only by parents but by extended family also. Their caring, loving concern was very obvious.
Putting the names with the faces of kids and relatives I have only known from the newsletter was great fun although challenging to keep straight.
Everyone shares a diagnosis and certain similar circumstances. I learned some useful information and hopefully shared some as well. I was impressed by the commitment of those who work to make the organization successful.
Annie and Clem put forth enormous effort to make sure we all had an enjoyable time and along with Nicholas and Ashley were kind and gracious hosts.
Rebecca: To be honest, I would say the best part of WAGR Weekend was just getting to meet everyone– all of the kids and young adults who have WAGR and are going through the syndrome. They have many of the same challenges I have. When I met all of them I didn’t feel like I’m the only one. I didn’t feel alone. What were the other highlights of the weekend? I enjoyed bowling and trying for a strike.
Swimming was great. Sitting in the hot tub with a new friend and talking was fun. I especially liked the pizza/ dance party. I’d like to keep in touch through Facebook!*
by Chuck, Mary and Rebecca
Our Treasured Weekend Experience
Everyone told me that the first couple of years is the toughest. And they weren’t kidding. In the last 19 months I have learned a lot about what’s important in life. I have learned many lessons from my son, who has WAGR Syndrome. I have learned to expect things to change. I have learned to practice patience on a new level with my children, and I have learned not to be so patient with those that care for my son.
The WAGR email group has been a “sender” of many of those lessons. To read other stories, and to have someone else, whom you have not ever met, send you a comforting word, or just let you know that they have “been there done that”, makes that island of uncertainty seem a little less scary.
I never thought that I could experience emotions more powerful than those. I was wrong.
My family and I attended WAGR Weekend 2011. The timing of this weekend came at the end of Noah’s chemo protocol and just prior to a couple of surgeries. Leading up to this point, our family had figured out a “system” of juggling work, appointments, therapy and feeding (Noah’s biggest obstacle). We, like most families, figure it out as we go along. We start out with a plan, but we’ve learned that the plan is subject to change at any moment and we need to be prepared for anything.
On this weekend, I was prepared for my son to have a meltdown, or prepared for my daughter to have a tantrum or prepared that we might have to run to the ER. What I was not prepared for was the treasure of emotion and love that I was embraced with from the moment we arrived. On the Mom’s night out, I don’t know that I said much, but I was so moved by the other stories and other lessons that were shared. Not only listening to the actual words that my fellow Super Moms spoke, but also learning from their actions, their emotions, their tears and their laughter.
For the first time in a while I felt like I innately belonged to this group of people. We were magically joined together by our amazing children. I was not an outsider looking in, nor was I in a fishbowl for others to examine. Even though I have never met any of the fellow WAGR families prior, those three days felt like home at heart.
by Jennifer Gromek