Children Visiting

Children Visiting 5.26.2021

“The Kids are coming on Sunday at 2:30”

“What kids?”

“You know  the KIDS!”

“Oh you mean THE KIDS!”

My husband is a CASA (court appointed special advocate).  For the last several years he saw the KIDs on a regular basis.  I never knew who the KIDs were, their ages or anything about them.  I just knew that when he went to see the KIDS, it was very important and also very special.  The importance was he would gather information so he could “be their voices” in court cases concerning their guardianship.   It was also a special time to have a visitor come to their home just for them.  The visits usually ended with all the kids in the family gathering around to hear a “Charlie Story.”

He saw the KIDS for 7 years. Finally, their case was completed, and they became available for adoption.  Their foster parents adopted them.  And when the final papers were signed, Charlie was able to tell me about these KIDS.

Parkinson’s “plays on” no matter what you have planned.  This was a special day and I genuinely wanted  to do my part in it.  I usually stay home and hide from events when my symptoms are exceptionally annoying.  There  was a decision I had to make about today.  Because my balance was so bad I could easily trip over the toys Charlie brought in from the shelves in the garage.  My language was a bit confused when I tried to talk.  I had trouble getting out of the chair.  And the sound level, that glorious sound of children playing, was interspersed with shrieks and cries that pierced my ears. I could foresee a major panic attack brewing. Yet, there would no hiding when the KIDS came.  They would  seek me out.

I made my decision.  Just stay.  Sit in the living room and enjoy watching these KIDS play. 

And I did and it was a great time.  As the afternoon wore on  each child initiated an interaction with me.  I didn’t have to  go to them.  Even the baby got involved by glancing over at me.   Our eyes locked.  He ducked under his mom’s arm and then sprang back up.  “Peek a  boo”.  He  initiated “peek a boo” with me! How cool is that!

Charlie had help cooking up hotdogs, hamburgers and corn on the cob. He made a condiment tray and bought double stuffed potatoes salad from the store deli.

Another choice to make… I had to shake off the fact that I hadn’t prepared the meal.   I  let my visitors serve me and clean up my home.  It was hard to be OK with in my head and in my heart.  We were breaking down the schema of “having dinner  guests”.    I was in a new role.

 Our plans to enjoy our back yard and patio were ruined by a spring storm so we sat together around the big kitchen table, like thanksgiving.  It was thanksgiving!

At the end of our time together, one of the younger boys came up to Charlie and said  “ Are we ever going to see you again?” He put it all together that today was a going-away party:  that Charlie’s official role in their lives was over.

Charlie’s response  “well, if you want to we can be friends for rest of your life.”

It was so quiet after they left.  But as I looked around the empty living room. I could see every little face looking back at me. None of them had judged because I couldn’t move very well.  I don’t think they even noticed.

Another step in accepting myself.

Published by Carol Clupny, author The Ribbon of Road Ahead: One Woman's Remarkable Journey with Parkinson's Disease

I am a middle aged woman with Parkinson's Disease. When I was first diagnosed I spent a lot of time researching the disease. Seeing a video of a man in the advanced stages of the disease attempting to get out of his chair and then "freezing" as he tried to walk across the room got me off my butt and moving. Great adventures on the Camino de Santiago and with TEAM Pedaling for Parkinson's across IOWA, as well as the day to day adventures of life have lead me to writing. My first novel, a memoir, was published early 2019. It is called, you got it THE RIBBON OF ROAD AHEAD. Living with the degenerative neurological disease Parkinson's, ULTREIA is a word that guides me. I have chosen it as the name of my business ULTREIA BOOKS. It comes from Latin and old French and means "unfailing courage". In the old days, pilgrims would call "Ultreïa" to each other as encouragement "Go up, go further!" Nowadays we would say "You can do this thing". It takes courage to live with Parkinson's. May I face each day with unfailing courage. Ab Here is more about me; I was living an active lifestyle riding horses, hiking, climbing and snow skiing when at age fifty she was diagnosed with Parkinsons. Retiring from her career as a speech-language pathologist she decided to “take to the road” to battle the disease. Her first steps, walking out her door to the mailbox, lead to trekking over 1000 miles of pilgrimage trails on the Camino de Santiago in France and Spain. A dusty bike discovered in the garage resulted in four rides on the Des Moines Register’s Annual Great Bike Ride Across Iowa with the Pedaling for Parkinsons Team. These adventures inspired her to write a memoir The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease. Carol blogs about her everyday life as a middle-aged woman in the mid-stages of Parkinson’s disease. Her honest, humorous and casual narrative style brings the reader to an intimate understanding of Carol’s resilience and acceptance. Her blog, sharing the name of her book ”The Ribbon of Road Ahead” can be found at www.ultreiablog.org After completing a Masters of Science in Speech Pathology from Eastern Washington University Carol received certification in School Leadership and Administration from Lewis and Clark College. She provided speech pathology services and was a program director for 32 years in the wide geographic expanse of eastern Oregon. Active in the Oregon Speech-Language and Hearing Association she received honors of the association and the presidential award for her work on recruitment and retention of speech and hearing professionals. Carol presented numerous papers and projects at local, state and regional professional conferences. She was appointed by Governor Ted Kulongoski to two terms of the Oregon Board of Examiners of Speech Pathology and Audiology, the state’s licencing and consumer protection agency. Since her diagnosis in 2008, Carol has become active in the Parkinson’s Community as an advocate, an Ambassador for the Davis Phinney Foundation and support group facilitator for Parkinson's Resources of Oregon. She was appointed the regional patient representative for the Parkinson's Foundation’s Women with PD TALK study. In September of 2019 the Michael J Fox Foundation selected Carol to participate in the Parkinson’s Policy Forum in Washington DC. As an attendee at the World Parkinson Congress in 2016 in Portand, Oregon, Carol presnted a poster session examining the decision making process for patients considering deep brain stimulaiton. At the 2019 WPC in Kyoto, Japan she presented a poster on vision concerns of women with PD and lead small group discussions. Her book The Ribbon of Road Ahead has provided many speaking opportunities for Carol. In 2019 and early 2020 she visited 24 support groups in Washington, Idaho, Oregon and California to share her thoughts on living well with the disease. In addition, she has presented talks for The Center on Aging in San Francisco, Parkinson's Place in Las Vegas, Northwest Parkinson's Foundation in Richland WA and virtually through their HOPE online program. In late 2020 she rejuvenated her voice and narrated her book. It became available as an audio book in 2021. As part of this project she read stories over the airwaves on RadioParkies Australia with DJ Madonna and in Great Britain with DJ Johnny Parky. She and her husband Charlie have two adult sons. They live on a small hobby farm in eastern Oregon. Contact Information: Carol Clupny PO BOX 128, Hermiston, OR 97838 caclupny@gmail.com (541) 720-4256

6 thoughts on “Children Visiting

  1. So well said, Carol! People feel blessed to help and I’m sure it’s tough not to do everything you once did, but I’m glad you can find a happy medium!!!

  2. Omg !!Im so Blessed to even have gotten to meet you and Charlie but to call you Aunt and Uncle and my kids feel like they have family that won’t disappear..It’s truely Amazing !!They are still talking about Sunday dinner at Charlie’s and Carols and not wanting to go home ..You were so gracious with our children no matter how they acted and not a lot of people except them so we get being worries about how others will perceive you !! Gods a good God to Us and we are so thankful for the amazing people like you he’s put in our paths …Driving up and down the mountain twice a day has given us extra time to listen to you read your book ..it’s like sitting in the living room wrapped in a blanket sitting in front of the fire all cozy hearing the story …Cannot tell you how much we’ve enjoyed reading your book and getting to know your story …David had so much fun cooking and trading glasses with Charlie we are still laughing about that !!You are amazing people doing amazing things for others !!God Bless!!

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