Our First WAGR Weekend
My husband John and I with our daughter Ashley attended our first WAGR weekend in July of 2010. During a deployment, John had found a web site about 11p- deletion, which our daughter Ashley was diagnosed with in 1988. He forwarded this information on to me and I quickly looked into it.
At the time of Ashley’s diagnosis the doctor said that her chromosome deletion was rare with about 1 in 100,000 live births. She gave us some information and sent us on our way with numerous follow up appointments and referrals. As first time parents of a precious four month old, this type of news is devastating. There were no groups to support families; there were no support services for this diagnosis. I was very glad we had finally found a support group and that we were no longer alone.
Before attending this weekend, I had not met another child with the same diagnosis as Ashley.
What a great time we had at our first WAGR Weekend event. I had found a few people within this group on the internet and talked and asked questions. I had to encourage my husband to come with us for the weekend. I’ll never forget how welcomed I felt walking into the lobby of the hotel; the culmination of the many months on the internet. We met so many wonderful people with shared experiences. I felt an instant bond. We were overwhelmed with the generosity of this instant family.
Knowing that it might be overwhelming for Ashley, we kept the weekend at her pace. There were a lot of activities to take in. It took Ashley a bit to feel comfortable with everyone and when she finally did, it was time to say our good-byes and plan for the next year. I wish that we were able to bring our other girls; I think that Ashley would have been more comfortable from the start. The events that were available were great. We only took in what Ashley was willing to do, as not to upset the situation. But as we found out, other families were dealing with the same situations or behaviors that we were.
We took in all the information about the research study, signed up for it and are looking forward to learning more about our daughter. I’m sure that all the knowledge we learn will make our children the best they can be.
We are already making plans for WAGR Weekend 2011 and this time we are not leaving anyone home. I can’t wait to see everyone again and hear the study updates. I asked my husband to share his thoughts about the weekend. Here is what he has to say….he isn’t usually too much for words.
Leslie Volk, CA