Madeleine’s Notes

The summer is off to a sweet start.

My sister, Mary (whom many of you know), just completed a wonderful visit. She was a great help to me and spent good time with Gary. Mary thought I should share some of the many wonderful things and real pleasures Gary and I enjoy, despite his severe disability. Our life together -- which might appear grim and depressing from the outside -- is rich in books and music, children and grandchildren, politics and friendship. (We have our grim moments, of course, but they are not the norm.)

Weather and support permitting, we get out pretty regularly. The picture on Gary’s blog profile was taken at Topanga State Park, where we picnicked with Elizabeth and her kids and Katy and her kids and David and Linnea Hillesland, Kate’s in-laws. A couple of weeks ago we visited our good friends Kathryn and Ali at their home in Valley Village. (Margaret was in town and accompanied us.) Just yesterday we went to Roxbury Park to test out the new manual wheelchair, a tilt-in-space I bought on eBay, which Joseph, our long-term caregiver, has outfitted with a vent tray and a basket for the battery.

Our life, while strenuous, is rich in blessings:

Gary’s health is stable and his recent labs all clear. He is not at death’s door. He is not in pain. He gets massage every week and extensive range-of-motion exercises every day.

He is perfectly alert and aware and engaged. He listens to the New York Times and various books and magazines on his iPod every day. (If I could figure out how to do it, I would post the long and impressive list of what he's read.) Sports and movies on TV provide hours of pleasure. His good friend and colleague, Pastor John Rollefson, visits him every week.

The grandkids visit often and lean up against him and pet him and watch children's shows on his big TV.

The new baby (Madeleine!) is a great joy for all of us. We took Gary to the hospital to visit her the day after she was born. They looked into each other’s eyes and bonded seriously.

Margaret and Karl have promised a cousin for little Madeleine in late December.

The Brainmaster technology offers hope—even though it’s a great deal of work, demands technological patience, and the outcome is far from certain. (I’ll share more about that in the days to come, but for now it’s an EEG system that reads brain waves that just might let Gary communicate, perhaps even write, again.)

Only the Lord knows what tomorrow will bring, or next week or next month or next year. (That's hardly a new thought, but it's gained meaning for us in the past three years.) Meanwhile, we have learned patience and grown in love and gratitude for the gifts of God and for the people of God.

M