Kelsey and I had the delightful opportunity to speak at a Cub Scout Pack Meeting last Thursday. Our topic was “having compassion for those with disabilities.”
I have had numerous opportunities to speak to college classes, physicians, nurses, law firms, advocacy groups, parents, state meetings, and national conventions. I have a tub of materials, no maybe three tubs of materials, with displays and pieces of our 40 years of disability.
The tubs also date me, as I have a cassette recorder with cassette tapes, and an eight-track tape.
I was first asked to speak to parents when Kelsey was a preemie in the NICU. I was ecstatic. I wanted to help those who were just like me.
I was at a hospital, in a Neonatal Intensive Care Unit, with two babies, 1 pound and 2 pounds. I had walked into a new world, a world I knew nothing about.
Sure, I and my children had had medical problems that took sorting out. But none of those issues were lifelong, nor too costly.
However, disability or lifelong conditions added to a family, learning the resources, from every agency and government office, including, city, county, state, . . . in addition to the family's individual daily adaptations, whew, was huge.
Anyway, back to the Pack Meeting. Kelsey gets very nervous when she has to speak. So I began the presentation telling about her birth.
Kelsey was to wait out of the room, with her caregiver, Amy.
I had brought a 10th of the display, which filled the back of my Expedition. The scouts arrived and we began.
I showed the bowl I bathed her in. I told the story about the gallstones, as she was one of the first to have gallstones, from the TPN (total parental nutrition).
I displayed the dozens of newspaper articles written about her. My favorite was the California newspaper article from her birth, which was titled, “I Want to Live.”
I showed them her Barbie, in a wheelchair, and 30 plus years of Special Olympics medals, gold, silver, and bronze.
I spent about 10 minutes speaking and sharing as much as I could about Kelsey. Then I invited her in for questions from the Cub Scouts.
Again, I have had hundreds of opportunities to speak. But Kelsey, has had very few. So when she entered the room, Kelsey asked for the microphone and when she should sing.
Kelsey has been in the same church cultural hall for her brothers' Eagle Courts of Honor, church activities, and even funerals.
Kelsey has also sung at her Day program and to the Mental Health Commission Task Force.
Moving on, I had to convince Kelsey this was not a singing opportunity. It was a time to answer questions. She again asked me for the microphone.
It was a wonderful opportunity for the young scouts to talk to her and learn from her. I believe it was a good experience for all.
You may ask, did Kelsey sing?
Yes, she did. That was what was in her heart. I thought she'd want to sing, “You raise me up,” “I can only imagine,” “Hero,” or “I want to be Part of your World.”
She instead chose, “Teach me to Walk in the Light.” I will conclude with Kelsey's song.
“Teach me to walk in the light of his love, Teach me to pray to my Father above, Teach me to know of the things that are right, Teach me, teach me, to walk in the light”.
Diane Mack is coordinator of Putting Families First, Jackson County’s Family Week Foundation. Email her at firstname.lastname@example.org or visit www.jacksoncountyfamilyweek.org.