Cousin Steve(back), Little Marietta (seated), Baby Cousin Alice, On blanket, Aunt Marietta, Pat Roberts(my mom), Aunt Thelma 1967
It wasn’t until Tuesday, January 15th, that I knew who I wanted to feature on my “People I know (or have known)” category of this blog. I was on my way to South Portland Historical when I drove by my cousin’s old home on Broadway near the South Portland Armory. I noticed a wheelchair ramp outside and I was immediately overcome with tears and memories of my cousin who once lived there. Now that my son also uses a wheelchair, the whole issue of what is involved with disability is all too familiar.
I was flooded with memories of going to visit my dad’s brother and his family. My dad and his brother have always been very close and I have always been close to these cousins. On occasion, my Uncle and Aunt would go away for the weekend and they relied on my cousin Steven to help with her basic needs. I was there to make lunch and keep her company. She was nine years older than me and her name was Marietta. She was born with Hydrocephalus, commonly called ‘water on the brain’. She endured many long surgeries throughout her life and lived longer than doctors anticipated. She had a kidney removed and had shunts. She never walked. My sisters and I would play card games for what seemed like hours and she would let us listen to her 45 rpm records with her old time record player. She was very close to her mom, who was her primary caregiver. I often think of my aunt especially since her role is now mine: the caregiver. I think of her when I need strength from time to time. I remember thinking when I was a kid that she was tough as nails… maybe I have become a little of the same as there is nothing I would not do to make sure my son gets what he needs.
We called her Little Marietta as we also have an aunt with the same name. Little Marietta preferred to be called ‘Sis’ and we obliged. She was a huge fan of Wayne Newton and we used to think he seemed so far removed from our generation. We knew who he was but we were a little out of touch with his music. She is the one who introduced me to the song, “To Sir with Love” from the movie.
Over the years, Sis survived being seven, the year she was supposed to die. She survived being twelve, another fateful year supposedly. In fact, I never really thought of her as anything other than our cousin. She joined us every year camping. She only had a manual wheelchair, though an electric wheelchair would have given her great independence. I am not even sure if these were available back then. Only when one’s arms are no longer able to propel a manual wheelchair, is one able to get an electric wheelchair prescribed. Sometimes Aunt Thelma would put her on a lawn chair in a few inches of water so she could feel the water across her legs. We would all swim around her. As I look back, we were a big part of her life as there was no inclusion at school. She attended Cerebral Palsy School in Portland. Life has changed in many great ways for those with disabilities today. Imagine if my cousin had the internet!!! I think about that often especially that her world of friends was very limited. I think how amazing it is that my son, who has very limited hand use, can set the accessibility function so that a tiny keyboard is displayed onto the computer monitor and he uses a mouse to type. With these capabilities, he has communication with his friends through Instant Messaging. How I wish my cousin could have seen all of this. Her world would have been so different.
Sis joined us on many family outings. When we were little, we all took a trip to Bar Harbor where we were able to witness some shipbuilders building a wooden ship. Sis sat in the van and waited as we walked up to the building. When I look back, I am certain that the building was not accessible as that may be why she was in the van. Also pushing a wheelchair in the snow and the fact it was cold may have not been in her best interest. It was winter. I have a picture from that day of my brother and me wearing our winter coats. Sitting in the van was also not in her best interest that day. At the time, I was maybe five years old, and my brother four. We began our walk to the building when my brother nagged my father nonstop to go back for his mittens. My brother nagged and nagged until my father, frustrated, turned around to run back to get the mittens. He discovered that the emergency brake had let loose in the van and my cousin was inside hollering. My father ran and jumped into the moving van to stop it in time before it slipped into some water. My father was beside himself that had he not gone back, the outcome would have been much different. He credits my brother’s cold hands with changing the outcome of that day.
Anyway, my cousin had some enjoyment in her life as she was a camper at Pine Tree camp in Rome, Maine. Each year, I look at all the photos across the camp walls and look for her in at least three of the pictures [1960-1963]. My own son is a camper there as well. See www.pinetreesociety.org if you want to learn more about the camp and the tree house they have built for wheelchairs.
Once when I was maybe 7 or 8, we were on a visit to see Sis at her home on Broadway. I walked down the long hallway to her room. I told her how I had seen the movie ‘Heidi’ and that Heidi helped Clara to walk. Clara was the girl who used a wheelchair. Miraculously, Clara was able to walk. Well if it was good enough for Clara, I wanted my own cousin to walk too. I would help her so she would not be afraid to fall. She was shocked that I would mention such silly things. I think I scared her a little as she yelled at me and told me that she could not walk. I really just wanted her to be ok and when I think about that, I suppose it was all out of love for her, as kooky as that seems.
When I was in High School, my Aunt became very sick with cancer and she had to place her daughter in a nursing home. It was a very sad time. My cousin Steve was away in the military. When I look back, it was especially sad that Sis would no longer have her mom. I remember wishing that I had a car or a way to get around, as I would have loved to see her more often. She lived there a few years and then she became very ill. She died at age 31. Her life was a difficult one, but she had lots of love. She struggled and she was triumphant in her will to live. I was most sad to think of all she had been through in her short life and these were my thoughts at her funeral. I was grateful to have her as a cousin and I think she taught me many things, one of them the courage to love and accept her. There is not a day that passes when I don’t think of the bond between Sis and her mom. I will always be close to her brother, Steve, as he was a good brother to her. Sometimes siblings have great difficulty when another sibling needs so much medical attention. I hope to devote more stories on how my own family has coped with the challenges along the way, in the event the stories may help others.
Yes, a drive by her old home brought back many memories. I wish that she could have had her own ramp.
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