Holly with her boyfriend
High School Homecoming season has come and gone for 2015. We learned from the news about one Homecoming Queen, the sister of another student, who had Down Syndrome. (October is Down Syndrome Awareness Month. Click here for more details). This made me think of my cousin Holly Marie. (I always called her by both names because my Uncle Hollis, her grandfather, was also called Hollie.) She was adopted as an infant by my cousin Richard and his wife Mary Anne. She was born with Down Syndrome and several other medical problems.
We were sad to lose Holly six years ago. She was too young. The child is supposed to outlive the parent. Here are a few stories about her as I remember her, and those her mom, Mary Anne related at Holly’s memorial service.
I was able to spend a few hours with Holly here and there as she grew up. Richard’s mother, my Aunt Jeanne, made sure that the relatives could get together a few times a year. (She was Mrs. Hospitality. I learned much from my Aunt Jeanne.) One time Aunt Jeanne was babysitting Holly and she invited me and my daughter Heather to meet them at Comstock Park in Spokane, WA where we were living at the time. We had a lovely afternoon and even got ice cream from the ice-cream truck. I appreciated Aunt Jeanne’s efforts, as I had never been around anyone with Downs. Holly was an easy toddler and stayed on the blanket we had put down on the grass. (My daughter on the other hand was off and running!)
Then as an adult her parents were hosting a party at their home in Portland, OR. I was able to fly from Seattle, where we were living then, to Portland for the day. I was telling everyone how Holly’s Aunt Janet wanted so much to be there and had even thought about flying down for the day. Holly was so excited. She was extremely appreciative that Janet had wanted to be there!
Now here are Mary Anne’s notes from Holly’s memorial:
Honors for Holly
One way to know Holly, her sense of herself, her confidence in
her own strength and her clear and simple faith, was through her own
When Holly was 18 she was watching me pack for a trip and
asked where I was going. I was going somewhere for work, but the
destination sounded exotic to her, and she said, "You lucky dog." I
joked back that I was the luckiest person on earth. She considered
this for a few seconds. Then with great confidence said, "No, I am."
When my daughter-in-law and son were expecting their first
baby there was a brief period when a misinterpreted piece of medical
information suggested that their baby might have Down's Syndrome.
Overhearing some bits of concerned conversation, Holly asked what
was happening. I told her we were concerned because the baby
might have Down's Syndrome. If you know Holly, you know she was
a master of many looks. The look she gave me was somewhere
between disgust and disdain, and she said, "So?" "Well," I said, "you
know friends that have Down's like Penny and Dave and Andrew."
"I know what it is, but so what. They can handle it."
"Well," I said, "people with Down's Syndrome sometimes have
heart problems, like Penny."
Holly came right back with, "Well, she can handle it. Just like
me with my muscle problems. I can handle it."
There was nothing more for me to say.
About 3 years ago Dr. Kottingham, the pulmonologist who
cared for Holly called and suggested that Richard and I begin to
consider end of life questions for Holly. He also suggested that we
get legal guardianship of her so that the decisions, should we have to
make them, would be easier from a legal point of view. On our next
visit to the doctor, he brought this up with Holly and we talked of
many things. She was adamant that she did not want to be on a
respirator and expressed herself quite clearly. After the visit we were in the elevator going down to the parking garage. Holly had a way of raising difficult or private issues at inopportune times. And in the middle of the elevator she said, "I just wish you and the doctor wouldn't talk over me."
I said that I thought the doctor had tried to include her. Luckily,
the elevator door opened and we stepped out. But Holly wasn't done.
"I just have one question. Am I going to die?"
"Yes," I said. "You are going to die. Not right now, but that was
what we were talking about."
We continued across the parking lot and after a minute Holly
said, "Well, they are all waiting for me." She began her own litany of
the saints. Grandma Jeanne and Grandpa Hollis, Grandpa
Baldhead, Uncle Dean, Cathy (her birth mother), Orly, OJ, Auntie
Pork and Auntie John, Joanne and Fred (her beloved foster parents)
and all the way down to cousin Tommy, a second cousin of her
Grandma Jeanne who she met once when she was 7. "They are
waiting and when I get there they will have a party for me. They can't
wait to see me." I didn't have to say anything more.
When Holly was 6, my Auntie Pork died. Pork was a family
nickname for my Aunt Ida, a very proper unmarried schoolteacher.
Pork and Holly loved each other and thoroughly enjoyed their time
together. After Pork died, I was talking with Holly about Pork's death,
and she asked what God would say when Auntie Pork entered
heaven. I said I didn't know but asked her what she thought God
would say when God saw her in heaven. Holly didn't hesitate and
Halleluia, Holly, halleluia.
Now I don’t have to say anything more and you probably don’t have to either!