It happened in the very early morning. My mother called during breakfast to tell me. The news took my breath away and replaced it with a weight I am slowly becoming used to carrying. I can't make it to the funeral and it's making me sad. I need to memorialize her some way and right now the ol' blog, ephemeral as it may be, seems like the only option.
Aunt Barbara was my dad's handicapped sister. She was the fifth of seven children and had Rubenstein-Taybi syndrome. Because of her handicap I was always of two minds about her. I was struggling against my fear of her otherness to find the strength of compassion so I could relate to her somehow. I wanted to see through her handicap, through the difficulties this life threw at her, and see her as God saw her. I wanted to see her as His child; as one of His miracles. There were a few times that I think I came close.
We visited Barbara on most major holidays. She lived in a group home in Ogden and we lived in Cache Valley so we would trek down there for Christmas and her birthday and sometimes on other days. The first thing my dad always did was take her and the other folks in the house over to the 7-11 for Slurpees. We would all walk together and after a few minutes their smiles and excitement would crowd out the awkwardness of their gaits and what I percieved as strangess about them.
For her birthday we always gave her the same things: dollar bills and 3 Musketeers bars. Those things never lost their enchantment for her. She opened them with giddy fingers and would hold them high above her head, crowing with excitement, before tucking them safely into her fannypack. In her happiness she was always wild to hug someone and as much as I was nervous about her body a hug from Barbara never failed to impart some of the magic that made her who she was.
Eventually Barbara was moved to a rest home in our town. She spent six days a week at the rest home and Saturdays at our house. It was the same routine each week. My dad would drive to the rest home and pick up her and her laundry. He was closest to her in age and always the best friend she had. Barbara knew she could count on him because she always had. I think doing her laundry was his way of saying that he would do anything in the world for her. While her clothes were swished around in the washer and warmed and fluffed in the dryer she would watch The Sound of Music and sing along at the top of her lungs. She knew all the words and never missed a beat. When Barbara was there music filled the house.
When I knew her, singing was the truest form of communication with Barbara. Talking and words seem to roll around her body but never make it inside. But music, well, music was already inside her and singing--especially the hymn "I am a Child of God"--tapped into her essence. It was the way over the hurdles of her disablities.
I took her for granted for a lot of years, like most of us do with most of our loved ones. It wasn't until I read my grandmother's journals, Barbara's mother's journals, that I saw her a person. Instead of her being something strange and peripheral I could see her as a daughter and sister, as someone full of love and in need of love. I thought of her often and wondered how I could reach out to her but never found any answers--until a few weeks ago.
When we were on vacation in Utah I went with my dad and mom to visit Barbara. They had just finished one of the church services they did at the rest home and Barbara was sitting near the piano as the minister cleaned up. She recognized my dad--she doesn't remember me but she never forgets him--and took his hand. My dad introduced our family to the minister and she reached down (Barbara has been in a wheelchair for quite a few years now. She broke her leg and then her hip and decided learning to walk again wasn't worth it.) and put her arms around Barbara. My mom leaned over to hug Barbara too. I wrapped my arms around myself and wondered about the feel of her skin. The minister talked about God's love and somehow or other Barbara's singing came up and before I realized what I was doing I blurted out, "Have you heard Barbara sing 'I am a Child of God'? It's her favorite song." Of course Barbara sang it beautifully for us. And we sang with her. When Barbara sings it's hard not to join in. As I listened to her words I felt the Spirit envelope our group and hold us together. As the chorus rose and fell I knew that Barbara was part of our eternal family and I was filled with gratitude. For a split second her spirit felt enormous to me. For what was the last and probably the first time, I reached out and took her hand, her skin cool against my sweaty palms.
I don't imagine it meant much to Barbara. She was surrounded by people who loved her. The nurses all knew Barbara--there was a sort of bemused smile they all got when we mentioned her name--and they took excellent care of her. She had a roommate named Bev who was eternally patient and kind to Barbara. There were doctors and therapists and volunteers who all spent their time and energy on her. I think Barbara enjoyed her life and didn't miss an errant neice.
The truth is I missed her. I missed singing songs. I missed eating candy bars. I missed all the things I could have learned from her. I missed all the love she would have given. I missed her. And now I miss her more.
When I asked my dad about Barbara's death he said, "It will also not surprise you to know that my faith in Christ’s grace leaves me comforted that she is now free of her many challenges, rejoining loved ones who have gone before, and preparing for a glorious resurrection to eternal life and joy . . .[but] the world feels a little older and colder to me now." That is how my sadness feels too.
Maybe it's my sense of drama but I wanted to sing at her funeral. It seemed like the only appropriate gesture I could make for her, like maybe singing that one time would help her voice stay in this world a little longer. But that's not going to happen. So (humor me here, grief makes people do sometimes silly and irrational things), maybe those of you who read this could sing. Not a lot, nothing weird or crazy, but just sing. Sing "I am a Child of God" with your kids at bedtime or if you don't usually sing the hymns in sacrament meeting sing one this week or maybe just on your own in the car or something. For me it was Barbara's music that made this world not so cold and if others sing--just a little--some of her warmth, the Spirit's warmth, will linger. Thanks. (And thanks for refraining from calling me a wierdo for asking!)
p.s. Here is another hymn, "Be Thou My Vision", that my dad identified with Barbara. This is a Christian pop arrangement but I like it anyway :)