In the early days of my ALS, when our son was just a baby-tyke-little boy, we went everywhere. And I mean everywhere! That kid went to puppet shows at the library, children’s shows at the theater, symphony concerts and movies in the park, jazz festivals, art fairs, museum exhibits, cultural festivals, street fairs, the state fair, air shows, and church picnics in and out of town …
You name it, we were there, especially if it was free! So it’s understandable that I might get a little irritable when well-meaning individuals would come up, pat my hand and say, “It’s so nice to see you out!” I would smile tightly and think to myself, “What?! You think my husband keeps me locked in the closet?"
That was then, but little boys grow up. They learn how to drive and they want to hang out with their friends, not Mom and Dad. Accessible vans get older, too, and start to develop problems. My husband and I turned increasingly to our garden for entertainment. Through my husband’s efforts, it’s become a haven of great beauty and peace, beloved of the bees, butterflies and birds. We try to spend time in the yard every day, even when the garden is dormant.
Perhaps the greatest change has been in me. I no longer feel the need to be always going, in an effort to maintain normalcy. I’m happy to be living at home with my family and sharing many common interests with my husband. The computer keeps me connected to the world, and I am creatively challenged by my art and writing. The contemplative life draws me.
But on those rare occasions now when I find myself out and about and someone comes up and tells me how nice it is to see me out, I can sincerely smile and agree. It is nice to see me out!