Overcoming Adversity

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?

63 thoughts on “Overcoming Adversity”

  1. Thanks Renee, Sherrilee and Baboon bloggers for nurturing this space where Jessica could offer her thoughts about life with my good friend Aaron. I’ve seen a number of people who have faced more than the usual number of challenges, but Aaron has to take the cake for doing it all with style and humor. His great gift is as a communicator, which is an unexpected strength in someone who is non verbal. And the loving support of his family and an extended community is his not-so-secret super power!

    Liked by 11 people

    1. Rise and Shine, Baboons,

      This post and the trailer left me without words. I read it about an hour ago and it took me this long to find some words.

      I have seen Aaron around at MPR events and I think the State Fair over the years. I remember his replies during the first several years of the blog. Obviously, his day-to-day life takes superhuman effort and a desire to do what it takes just to get out the door in the morning. His parents’ and Jessica’s love and dedication to her Aaron’s welfare is also notable.

      So many people struggle in ways that are visible and invisible to those around them. Aaron’s struggles are visible due to the physical impairments. The family’s struggles to make a life around the disabilities add a layer of complexity.

      In the family I grew up in, we had a similar struggle at times. I watched my father struggle with MS and my entire family struggle to support him and his welfare. We watched my mother struggle with her lost dreams of family and marriage and her own mental health. It takes so much fortitude, both physical and emotional to manage this.

      My hat is off to Aaron and his entire family. I hope you get the resources you need for a new van and to keep on keeping on. Keep us posted about what comes next in the fundraising effort, please.

      Liked by 9 people

  2. Part of my job is evaluating individuals with developmental disabilities as part of their qualifying for services. Most of the individuals I evaluate are around the age of three. Their parents are really dedicated and want the best for them, and always seem to have hope for the future.

    Liked by 5 people

  3. Not adversity so much but cycle of life: took sandy in for physical yesterday. 3 major issues arose. Yet to be seen how I will handle all this.
    But seems petty to complain after hearing about Aaron

    Liked by 5 people

  4. Happy 65th birthday, vs. So far it looks like you have a glorious day for celebrating the occasion. Wishing you a day of smooth sailing and lots of sweet surprises.

    Liked by 4 people

        1. Fabulous day. Used several of my birthday freebie coupons. Had lunch with a friend. Met up for brief visit outdoors with two Other friends. Talked on the phone to Nonny and a couple of other friends. Can’t think of how it could’ve gone better.

          Liked by 4 people

  5. It seems I see people overcoming adversity all the time, will try to think of concrete examples later. Our current adversity here (with Husband’s stroke) seems huge at times, but reading this story about Aaron, where the adversity has been life-long – it just doesn’t hold a candle to that.

    Liked by 3 people

  6. I remember the first time I met Aaron at the state fair. I was surprised because I did not know of his issues until meeting him. He has a wonderful voice and does not use it as a platform for his disabilities and his struggles. That’s an amazing feat.

    Liked by 5 people

  7. I guess I should say hi at least. Hey gang! Long time no write, but I still have the email notifications Thanks Jess for the kind words. It’s not easy to be me sometimes, but not for the reasons you think. I have mental stuff like everyone else, dealing with heartbreaks, crushes, etc. Then there’s my tendency to procrastinate, which strikes a chord with everyone reading this I bet, but here i sit, still standing,

    Liked by 9 people

    1. hey arron
      i remember your bog entry about being the may day parade prince or whatever the title was and how much you were looking forward to it
      last time i saw you was at st joan’s at some concert

      you are a constant in the universe
      a positive force
      bless you bud

      the new van will be nice
      gonna paint racing stripes on it?

      Liked by 1 person

  8. Had a student years ago whose family was part of the grange in our valley, and whose grandfather I knew very well.
    One day she announced to me and the whole class that her grandfather had raped her again that morning. Her grandparents raised her after her mother ran off right after giving birth.
    A light bulb went on: why hadn’t I seen this. Then another light bulb: he was her father too.
    When arrested the man said that’s what women are for.
    She had been a wonderful student with a host of friends from the arts crowd. She quickly settled into foster care and stayed as a delight. Went onto college and graduated and got married to by reports a nice man. Would love to have an update. She would be approaching retirement by now.
    She was the only abused child other than my wife who did not think it was her fault. Come to think of it, they are very much alike. I asked her how she had done so well in school. She said because school was clean made sense.

    Liked by 6 people

      1. And at last word about 2000 the family did not know where she was, by which I mean her brothers. And they did try to find her

        Like

        1. Maybe I was hasty. But I’ll say goodbye now, really nice knowing you all. Been
          Tiptoeing round PJ from the start, I’ll leave you to it now.

          Like

        2. What I was getting at, Fenton, is that this is a horrendous story of a teen-aged girl having just gone through the trauma of being repeatedly raped by her own father, and delivering a baby conceived that way. Furthermore, considering the time and place, she likely had no support. Most likely she was shunned and shamed at a time when she desperately needed help. Even her own mother apparently was clueless. And you’re going to judge her for running as far away as she possibly could? I would have done the same thing. Either that or killed the bastard.

          Liked by 1 person

  9. Whenever I visit with a guy named Aaron for the first time, I check to see if they have watched Key and Peele Substitute Teacher. I suspect that Baboon Aaron will approach this with the humor intended.

    Liked by 4 people

    1. I also ask customer service people named Aaron, Jacqueline, Denise and Blake. My brother’s name was Timothy and I called him Tim-O-thee before Key and Peele were born.

      Liked by 3 people

  10. My mind is a jumble of contradictory thoughts and feelings right now. I can’t even begin to comprehend the day-to-day struggles you face when you have a disability like this. Yet you do, with a grace, dignity, humor and stamina that’s hard to fathom. As Aaron points out, it’s not as if being afflicted with any particular disability exempts you from all the other pitfalls of everyday living, you have to deal with them too.

    I salute you, Aaron, and your family for sharing your story. Good luck on raising the funds for a new van.

    Liked by 5 people

  11. OT been struggling with vision and glasses. New Glasses got all hung up COVID. Bounced around U.S for four months. Then when I got them they were not right. Then warranty expiration date passed while I was dealing with a crisis. Just got glasses that ARE RIGHT. From Shopko Optical which survives despite end of Shopko. Very good price. Small thing I know but I am excited to be able to see well at all distances.

    Liked by 6 people

  12. there is a chinese optical company that takes 10 days or so to get the glasses to you but the prices are very very low
    if you have a current vision test the can copy and ship
    fancy lens bifocal $100
    fancy lens no line bifocal $149
    non fancy line of lens $50-$100

    zenni optical

    Liked by 1 person

        1. I apologize, tim. One of the burdens of care giving is all the people who insist with great authority on how you should do it. Tired of people telling me how to live my life and take care of her. Sitting next to me in a waiting room yesterday a woman leaned over and grabbed my hand and told me I should put her in a home. I told her to let go my hand and stay out of my life. She did let go and then started to tell me why she knew, which was going to be I could see was not expertise, at which I told her to stay out of other people’s lives. Sandy started laughing which calmed me down until an hour ago

          Liked by 6 people

    1. Do you know anyone who has gotten bifocals from them, tim? I’m thinking, for that price it might be worth getting a spare pair, just in case.

      Like

  13. i often feel thankful for the good fortune i have been fortunate enough to enjoy and wondered how i would handle the challenges a different set of circumstances would require
    aaron is great example

    good seeing you again
    happy trails

    Liked by 4 people

  14. End of the day… and I will chime in with a “glad to hear from Aaron (and his sisters) again!”

    The group that came to mind when asked about adversity is the wonderful women I have met in the last year – a group of young(ish) widows, all with children at home. We met through a formal group and have stayed together even after those formal meetings ended. The stories vary: some lost a spouse to cancer, some unexpectedly, some with teenagers, some with elementary age kiddos, some are a couple years out since their spouse died, others still counting in months. And all wonderful women – helping hold each other up, nodding in understanding at the big and small things, showing up to help pick a paint color or clear out a part of the yard or cheer one on when she got back onstage to perform with her band for the first time in more than two years. While it is not the daily adversities that Aaron and his family live and have lived, they are their own hurdles to clear. Some days it’s allowing yourself to be a little too gleeful about the ability to fill the dishwasher how you want to (without compromise), some days it’s wanting so badly to puzzle out a problem with your spouse, some days it’s seeing the cast of your child’s eyes as they think about their parent and what he might be missing and having no way to fix it. The resilience of these women to find hope, to see a future, to figure out ways to remember their co-parent in the ways that best fit their family – I am glad I found them. We make each other laugh. And we sit with each other as one (or more) cries. Adversities, yes, but it’s easier with fellow travelers on the path with you.

    Liked by 7 people

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