Early in this blog’s history, we had a contributor who wrote exceedingly well and who was excited about life and his role in the world. His name is Aaron. Aaron was a reader and regular commentator in those early years.
This week, Dale Connelly, the founder of this blog, contacted me and Sherrilee about posting some writing by Aaron’s sister, Jessica. Dale commented:
“Aaron has multiple disabilities and gets around primarily in a powered wheelchair. You may have seen him at some of the State Fair shows back in the day. His family is organizing a Zoom event next Saturday, (August 7) to premiere a short (55 minute) documentary about Aaron and the difficult decisions his family faced when he was born. The event is also a fundraiser to gather money to replace Aaron’s accessible van, his primary form of transportation.”
We thought this was a great topic for a post. I have communicated with both Aaron and his sister, and this is how Aaron describes himself:
Aaron Westendorp is a musician, online variety music show host, and a self-advocate in Hopkins, Minnesota, who uses a communication device. Aaron has a brain stem lesion which causes spastic quadriparesis, a partial paralysis from the eyes down. He still has a independent life and a fun personality.
The following is a heartfelt statement from his sister, Jessica Westendorp:
I could have written a different speech every day this year, that’s how many different feelings I have about Aaron and growing up with Aaron. I have humorous, light, jovial speeches, and dark, scary, cynical speeches that underscore Aaron’s evil side. Just kidding. Aaron doesn’t really have an evil side. That Aaron is a bright light, most of you already know. He has always been a calm being, open and waiting for whatever the next step might be. The only time I can remember Aaron loosing his cool was for a brief period in the 5th grade when math and after school studies pushed him to desperation and low lows. He got angry. In that time there was a moment when Aaron looked at me and sighed and it was if he said to me, “so…this is how it is”. And then, he was fine again, calm, collected, open and ready to keep going.
Aaron is disabled. I know this is news to you. It’s hard to see the disability when there is so much AARON to see. But, in case you didn’t get the memo, he is special, differently abled, challenged, a short bus super kid. Other words that were used on him were Duke, Duker, King of Kids, and because there is only so much wonder and excitement I can allow to follow him around, he is also a bratty kid brother.
Aaron’s disability was large. It was another person in the family always taking all of the resources and lightness out of anything. Trips to anywhere were filled with, “but are there curb cutouts? Can he fit through the door? Are there steps inside? Will we need to ask for special help maneuvering or accessing the bathroom?” And then, the weight of carrying all emergency equipment and healthcare needs with him. The backpack needed to be packed and repacked. He needed help with shoes and jacket. He needed to be loaded into the van and tied down. Then Jill and i would translate his finger spelling, “why don’t we go on more family outings?”
I feel heavy and angry re-living that. It was not glamorous. but, the humor helps. One time, when we were all tired and in a long stint of hard times, Mom and Aaron, and Jill went to Burlington Coat Factory. They got out of the van after parking in the handicapped spot. As my mom walked away from the van someone snarked about her use of the handicapped parking spot. Used to public perception often being askew there would usually be a kind reference to my brother or ignoring the problem. On this day my mom said, in her voice we all know as the “mom is not in a great place voice”, “WE ARE HANDICAPPED!”. “we”. “are”. “handicapped”. We are not, and yet, we are and the clashing perceptions combined with the fatigue of it all was the hilarity. And then, there were the helpers. The nurses and PCAs were there ALL THE TIME. Whether they wanted to be or not, they became part of the fabric of our family. They may remember us as a job. I remember them being in my home, sharing a space, and I remember processing my life in front of them. Like any family members some were super duper cool and others, we’ll say, clashed with our brand of special. But, they were there. They helped support the constant needs. Food prep. treatments, mobility, translation. My favorite of these people were those that understood the need to keep the light, the humor, and the irony alive, even and especially when I could not find these.
This all must have been so different for my parents. They had a childhood, a million years before and now they had the weight of this adulthood that they finessed and juggled and braved with faces of intensity and love. But for Jill, Aaron, and I this was our childhood. The pieces of it leave deep impressions. The shiny medical equipment, the smells of medicine, the short quick pace of a nurse who is tasked all become your normal. I will always be a force of quiet, deep love, forever broken by the immensity of daily, weekly, monthly, and yearly struggles that are inexplicable in this speech. I am full of gratitude and am privileged to have learned so much, but due to broken perceptions and realities faced and viewed often, I will also carry a force of anger, always, a deep understanding of disparity and injustice.
Thank you for showing up. Thank you for loving the little brother i worked hard to push and challenge. Thank you for loving this guy who I prayed for, who was surrounded by the light of many prayers. Thank you for knowing that there is no clear narrative here, only people with real needs, hopes, and aspirations all in real time.
Here is the hyperlink to the video regarding Aaron.
Who do you know who has overcome adversity? How did they do it? How have you overcome adversity?
