My husband Matt and I attended the conference in Utah this summer with our son Frank, who was eight months old at the time. We were “first-time” attendees and were very unsure of what to expect. We weren’t sure how many people would be attending, whether we would find the information useful to us, or even whether we would find it encouraging or discouraging to see other people with 4p-. But we decided to leave the older kids with grandparents and head out, figuring at least it was a weekend away somewhere we’ve never been before.
Prior to the conference, I had only briefly met one other child with WHS, and my husband had not met anyone, and the one thing we were most hoping to come away from the conference with was a “snapshot” of what our son’s future would look like. I was unprepared for the emotion that overcame me when I walked into the banquet room the first night to see so very many precious faces of people who were loved enough by their families to be flown or driven there for the weekend. Most of the families we talked with over the next couple of days were so encouraging and positive. It really caught me off guard to be perfectly honest. I don’t know if I was expecting some sort of survival mode or what exactly, but the upbeat spirit of the families is what I think of first when friends ask me, “How was the conference?”
We saw a wide range of physical and developmental abilities, and although it was great to see the reality of this syndrome, the reality is that the developmental abilities are quite varied. So although we were hoping to get a snapshot of our son’s future, we instead got a snapshot of our own. I am much more confident that we can handle this, and not just handle it but continue to thrive as a family.
*Article appeared in our 3rd Quarter 2010 Newsletter.