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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Big Bird and The Count

Terri Reinhart


 I was Big Bird. He was The Count.

Our first child came to us, not in the usual way, but as a foster son. He was nine years old, tiny, with too thin arms and legs, and almost white skin. He had a family living in the mountains and the small community didn't have a school program to accommodate a student with cerebral palsy who used a wheelchair. For whatever reason, his family decided the best solution would be to have Jimmy in foster care during the school week.

I was working at the school in Denver he was to attend. When I learned of a child who needed a home, I jumped at the opportunity. I was 22, newly married, and couldn't wait to be a mom. Chris agreed, maybe because we were newly married. He was a great Papa from the beginning.

We were naïve. We had about as much training for taking care of a disabled child as the average parent of a disabled child, which is to say, none. A short visit from his mother to tell us of Jimmy's likes and dislikes and a few other important details, and we became instant parents to a nine year old boy. It was up to Jimmy to teach us now.


It was a full year. Chris became proficient at wheelchair repair and I created simple adaptive tools and learned how to carry a nine year old on my hip. We became aficionados of Sesame Street and Jimmy solved the problem of what to call us. Mom and Dad wouldn't do. Those titles were already taken. So, I was christened Big Bird and he was The Count. I can't remember the name he had for Chris. Bert, maybe?

On one occasion, we got lost in the old Children's Hospital with Jimmy in his wheelchair and couldn't find an elevator. Like a scene from The Twilight Zone, every way we went, we ran into long stairways. I'm almost positive we ended up bumping down at least two of them. Fortunately, Jimmy only weighed about 40 lbs at the time.

He had two surgeries that year and I sat with him so many times, trying to take his mind off the pain by letting him “punch” me in the face. His fist would connect with my chin and my chin would move to one side, making me talk funny. It was a fun game for both of us and it made him laugh.


He left us after a year, just three weeks before John was born. I visited him at school a number of times and when the SEMBCS Sullivan school closed, I lost track of where he had gone. Some years later, I was able to visit again when our neighbor had Jimmy in her summer class in Jefferson County. A few more years went by and his mother brought him to see us when he was 21. He was graduating from high school and would be moving to a group home in Loveland.

Then I really lost track of him. His parents had divorced and I didn't have their contact information. Several times, I tried to find him, but without luck.

Last week, a friend posted a note on Facebook about her foster daughter. It made me think of Jimmy again. On impulse, I went to Google and typed in his name, remembering this time to put Jr. after his name. Right away I found him. The first entry listed his name and birthdate. There could be no mistake. My heart started to beat a little faster as I clicked on the entry.

What I found was his obituary. Jimmy had died just three years after I last saw him.

I was in shock. I didn't sleep much that night and got up at 5 am to look through our photographs. I hope my parenting skills are never judged by how organized my family photos are.

How do you say goodbye to someone who left 18 years ago? How do you grieve?

At the same time I was cruising through Facebook and Google, I had also found a lovely wool sweater listed for sale or trade on a Waldorf site. It was a lovely, handmade sweater, just right for a little girl. I wrote and asked the seller to look at my website to see if there was something I could make for her in trade. Ten minutes after I found Jimmy, she wrote back asking if I could make a wool picture. It wasn't for her, she explained. It would be put in a shop and sold to raise money for a camp for disabled children.

I am working on it now. It will be a gift in memory of The Count, from Big Bird.