I am the oldest of two, and my younger sister, who died at 66 in March, had many health problems. My sister, whose name was Danielen was what used to be called “severely and profoundly retarded,” had epilepsy and other medical ills. Throughout her life, she fell many many times, breaking arms, legs and once her neck. Her doctor, beloved by my parents, also told me that probably she did not feel pain in the same way we did. (This was after I accompanied her and almost fainted when he drew blood and she had a seizure.) To my discredit, I believed him, since he also was the parent of such a child—but in my defense, I was young and would never have questioned a doctor.
I am 71 now, and I know that all humans, in fact all mammals, feel pain. What hurts, hurts. More importantly, I have learned some things in life are not fixable. We all keep trying, but there it is.
I know that not all living is grim and painful. My sister was at home until she was 13, and she visited my parents’ home occasionally thereafter. There was laughter, love, and a succession of beagle dogs all named Tippy. Sunday night supper was always buttered popcorn and Bonanza.
Dani, as she grew to be called, spent most of her life, over 53 years of it, in New York state institutions and community homes. When our parents passed away, I became her guardian, mostly by phone, since I moved to Washington, DC after college. She, with mom and dad, visited us one Christmas, and I saw her other times in New York, but not nearly as much as I would have liked.
I heard about her visits to parties, and church and the New York State Fair. And I knew what music she liked, and about her love of cheese puffs and jewelry and dressing up. Obviously, she had a life—her own life, and she enjoyed living.
Dani adored animals and also the many people who loved and cared for her. As a child in Jordan, N.Y. , Danielen had two beloved older women caregivers named “Hinman” and “Hattie.” She called our dad “Lyman Wilcox” and our mom “Sally Wilcox.” I was ‘Laine.
About 15 years ago, she moved to a specialized medical group home in Chittenango New York, and I moved to Florida, 1,400 miles away. She had two fabulous caregivers and advocates there, Paula and Nessa, whose love, kindness and patience know no bounds.
She was also fond of others in the group home, especially the director, Patrick, who made her favorite breakfast, pancakes, Kim and Melissa from Day Hab, and all the staff at the Jay Street.
Over the years, other caregivers also touched her life. She was a resident at Craig Colony in Western New York, Syracuse Developmental Center and a group home in Weedsport as well as Rosewood Heights in Syracuse. That is what institutionalization meant. I went the day we first took her to Craig Colony in 1965, and I do not know to this day how my parents left her, but in those days somebody must have told them it was “for the best.”
Many former caregivers visited Dani at home before she died, but I was not among them, for a number of reasons. I face-timed her and had frequent telephone conversations with everyone involved, including the Hospice workers we called in to make sure her last journey was pain-free.
She died with her beloved doll “Baby Wilcox” by her side. I owe thanks beyond counting to all the people over the years, who took her into their hearts. Strangers, who loved and cared for her because it was their job and because it mattered.
At my home in Florida, I stayed in the kitchen and baked bread. A lot of sourdough bread. I wish I could have given it away to those at her bedside in New York, but it was not to be.
This month, I plan to place her ashes in the grave with mom and dad, in a quiet rural cemetery, with a headstone whose engraving bears three names. May she, after all these years — may all three of them, rest in peace.
Love is real, real is love
Love is feeling, feeling love
Love is wanting to be loved
Love is touch, touch is love
Love is reaching, reaching love
Love is asking to be loved
Love is you
You and me
Love is knowing
we can be
Love is free, free is love
Love is living, living love
Love is needing to be loved