I would say this situation is hardest on Wil. He doesn’t understand as much as I’ve explained it. I’ve heard the response, “I don’t understand, either,” which I respect and appreciate. But Wil doesn’t understand what a virus is. We do know what a virus is, even not knowing all the details of this particular one.
In many ways, I’ve related this extended experience to living with Wil as an adult, should he decide to live at home. I’m the one he leans on, I’m the one he has to talk to, I’m the one to motivate his reading/speech/motor skills, and nearly 100% of his way to get to places. Many of his typical peers, in the coming years, won’t need this help and will be knee deep in their own lives. The importance of Wil making friends with those of his abilities is becoming more apparent and essential. I’ve had parents of adults with Down syndrome tell me of the limited opportunities and activities for their kids. They are their kids’ anchors and a great part of their entertainment and continuation of learning skills. I used to think, “Well, there has to be more out there for our kids.” I heard their words, but couldn’t grasp the full meaning of what they meant. While I can’t yet see through the same lens as they do, as Wil gets older I’m grasping more of what they were telling me. I’m feeling it more than just hearing the words. Please don’t misunderstand, none of us would trade this life. We love our chromosome-enhanced life. What I’m getting at is it’s a new reality for us that we have few examples of. Our kids mature and the divide grows between the typical world and our Down syndrome world.
I’ve heard the response, “No one knows what the future holds.” I appreciate respect that answer. But there are situations we grasp even if we don’t have all the details, and situations we don’t grasp simply for the reason we have nothing to relate it to.
Just because we think we understand, doesn’t mean we do…until we can feel it for ourselves. Then it becomes real.
Stories of Wil, my son, who has Down syndrome 