Apr 23 2008

Why Don’t They Call It Up Syndrome?

Sally first came to our guest ranch when she was five. She had Down Syndrome, something none of us had seen before. She looked funny, talked funny and kind of scared us. At that time she only ate peanut butter so we immediately nicknamed her Peanut Butter Sally. She was a bit wild at the table. Peanut butter would fly about in a 3 foot radius when she was eating. We gave her a wide berth and let her sisters take care of her.

Every summer for more than 35 years, Sally came to the ranch. She continued to grow and learn and astound us. The first big growth I remember is when she announced she now ate more than peanut butter including salads. She then proceeded to make herself a ketchup sandwich (two slices of bread and ketchup). We were promptly grossed out.

One summer she declared her intention to learn to ride. She was 12 at the time. I was 16 and enjoying a summer of little work and no responsibility. As the person with the most time, I was promptly nominated the riding instructor. In the beginning of the project, I grumbled a lot. Then bit by bit, I became hooked and totally involved in Sally learning to ride.

We somehow came up with a fantastic plan. We set a discernible goal that wasn’t too big for the time period we had (2 weeks). Sally wanted to be able to ride by herself to the breakfast ride, which was several miles from the ranch and only offered once every two weeks. We started with me walking beside Sally on her horse, Comanche. We didn’t make it very far before she got tired and wanted to turn back. Each day I would coax her a little bit farther. At one point she felt comfortable enough for me to ride my own horse beside her, holding her horse on a lead rope. Bit by bit we got closer to her goal. She would sing western songs in her wonderful monotone as we rode (“A cowboy needs his horse, needs his horse, needs his horse…”) Finally, she was ready for the breakfast ride. She wanted to ride with her family on her own, so I went ahead and waited a bit anxiously for her at the spot where we were having breakfast. I have an internal snapshot of Sally, as she rode over the hill, smiling from ear to ear, very proud of herself. I was ecstatic for her.

After that summer, she rode every time she came to the ranch. Once Sally learned something she never had to relearn it. She could recite every president, vice president and their wives starting with George Washington. She read Hardy Boys books from the ranch library and adored Michael Jackson. She knew everything about him and was loyal to him even through the times of bad press. Once I was smooching with my fiance and I was startled to see Sally about two inches from our faces. “Don’t stop,” she said, “I loooove romance!”

At some point Sally and I started a tradition of going off and doing something special together. We floated the river, or went to dinner and a movie, or visited the local caverns. One time we had a slumber party and stayed in the big city of Bozeman. As Sally got ready for bed she began her nightly prayer ritual which involved not only family members, but every pet she ever had, and every pet the ranch had ever had, including all the horses she had ridden. All of her friends were in the prayer, and every staff member of the ranch. Of course, Michael Jackson was in the prayer as well. After about 15 minutes, I was starting to get a bit miffed. Everyone and his grandmother was in that prayer, except me! Finally she came to the end of her prayer. I had given up being mentioned at that point. Then Sally said, “And God, I’ve saved the best for last. God bless, gia, my best friend who taught me to ride and…” The prayer went on for 10 minutes singing my praises. I was humbled by Sally’s incredible generosity.

What Sally taught me was how humans grow no matter what their challenges. I was never afraid of having a child of my own with special needs because of Sally and her family. They showed me how a person could grow and make a difference to the world with the gifts she has. Every year that Sally came I waited to see what was new for her. Some years she showed her gold medals from Special Olympics. She was president of one of the Down Syndrome associations at one point. That year she announced that she was renaming Down Syndrome to Up Syndrome.

I always pay attention to my first thoughts in the morning because they are an indicator of messages that I’ve received in the night. I woke up this morning thinking of Sally and wanting to write about her. I wondered why. Had something happened to Sally? (I don’t think so). I think Sally came to me last night to inspire me and encourage me to become all that I can become. To not be afraid of stepping out in my light and helping those that I can. That whatever unfolds from all of that is just part of the process of growth and nothing to be afraid of.

Thank you, Sally, for all the gifts you’ve brought me. God bless you.

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4 responses so far

4 Responses to “Why Don’t They Call It Up Syndrome?”

  1. Carolyn says:

    So i read this on the heels of the April 19: “Inspiration” post … and was inspired. Thank you, Sally, for coming into gia’s life so you/she could inspire us all over again! WOW!

  2. JHS says:

    Thanks for participating in this week’s Carnival of Family Life hosted by Riley at All Rileyed Up! Be sure to drop by and check out the other wonderful submissions included in this week’s Carnival!

  3. Riley says:

    Very sweet. It sounds like you were just as wonderful and inspirational to Sally as vice versa.

  4. [...] Combs-Ramirez wrote a touching memoir about her friend Sally, Why Don’t They Call It Up Syndrome?, posted at The Science of Energy [...]

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