from: Jane Schulz

Dear Ann and Rud,

Billy's 53rd birthday was last Thursday. After our celebration we spent a sleepless night dealing with his severe chest pain. I felt sure it was acid reflux ( based on past experience and our sinful birthday menu) but still had a lot of anxiety. The following day spent in arduous diagnostic procedures revealed that he has gall stones, not of immediate concern but indicationg surgery possibly in the near future. I was identifying with you so closely, just dimly imagining my life without him. I had also read just recently that this is the first generation of people with Down syndrome who will outlive their parents. And I know that if that happens he will be devastated, regardless of my careful planning. So we can't win, but can only appreciate the time we have with our amazing sons. I do know that is small comfort but it's all I have.

My knowledge of Jay and you goes back so far that my memories are different from most of your friends. I still think of him as Jay, knowing that he preferred J.T., and remember his beautiful curly hair, his winning smile, and his surprising behavior. But more than his actions, I recall your insightful and loving ways of dealing with them - your instinctive adjustments to allow him to live with respect and dignity.

When you realized that Jay's attachment to the tinker toy always present in hand was not "age appropriate" you substituted a clay pipe, which was. When it was time for him to go to work, you found a job in which he could wear a coat and tie according to his wishes. You went to boundless ends to create a job and a remarkable living situation, allowing him freedom and still a close connection to his family.

I am aware of some of the numerous embarrassing and frightening experiences you and Kate and Amy had with Jay. We have had some of those too. Kate's beautiful piece reminded me of Tom's story when he and Billy were traveling together and stopped at a welcome center to use the bathroom. The urinals were filled with truckers, Tom, and Billy. As they were occcupied, Billy reached over, touched Tom's shoulder, and declared in a loud voice, " I love youTom." Our children learned from us, to laugh. That ability transfers to many life situations, as I'm sure your daughters have also learned.

Remember the carrot cake ? We were so busy working on our book that we didn't notice, until it was too late, that Jay had eaten the whole cake. And what did we do? We laughed. When I think of you and Rud now, I see your laughter mingled with your tears.

Your loss is my loss, too. I do know, however, maybe more than most of your friends, that Jay's contributions through your efforts, understanding, and accomplishements, speak to a life of greatness for you and for him.

I love you and I ache for you, my dear and precious friends.
Jane Schulz