Monday, February 18, 2008

Farewell Tribute to my Beloved Aunt with a Special Needs Son

Photo: My Aunt Bessie, then 92, with her son Max at a seventh birthday party (at a park in Ohio) for her great nephew, my son (who is now 9). The photo was taken by me on August 17, 2005. She had a bruised hip that was bothering at the time, but she attended anyway.

My Aunt Bessie died 1 a.m. Thursday morning at the age of 94 and a little bit of my heart went with her. We had a special relationship--my aunt and I. She was 58 years older than me, but that didn't matter. My mom used to take me to her sister's house in the country on New Year's Eve where I would spend the night with my aunt and her son Max, who had cerebral palsy, (but who also displayed signs not unlike autism.)

My aunt and I exchanged New Year's gifts for as long as I can remember. It would always be something small like maybe a calendar, some candy and a small car for her and Max respectively and a kitchen towel with a cat motif for me as well as home-baked cookies. When I was younger and single, I'd receive a handmade ornament. I still hang every one of those ornaments on my tree.

Every September I'd get a birthday card from her without fail. Aunt Bess even sent me one for my last b-day--with a handwritten note. She was always a sharp lady who knew how to delay our departure by pulling out a photo or a plate of cookies. My husband and I could always count of seeing her face as she peered out from a window in her door and waved at us as we pulled out of her driveway.

Her son was born at home about seventy two years ago in early August with some complications. His dad died back in 1975 when I was four. I heard that he was a strapping athlete who needed to come to terms with having a special needs son.

Aunt Bessie never talked much about being a mother to a person with special needs. However, when I mentioned how my own son with autism would make me fear for his safety when he ran down the street, she said "well, at least he can run."

Max is a small guy--less than five feet tall and very thin (almost fragile looking.) His most astounding feature is a full head of black hair. There's hardly any gray to be seen. I do not think he's had a lot to worry about in his lifetime--thanks to excellent care from my aunt. One wouldn't know he is in his seventies--a full-fledged senior citizen.

He's a sweet guy who wears bib overalls and scoots on the floor on his bottom when he doesn't have something nearby to grab on to while walking. He's also good at maneuvering a wheel chair with his feet. Eye contact has always been hard for my cousin. He also has a tendency to repeat things. However, people really like him and the staff at his nursing home calls him Mr. Max. Talking to him is easy once you learn his ways.

"When's your birthday?" Max often asks me.

"You know when my birthday is!" I'd reply. When is it?"

"It's in September," he'd say with a smile.

"That's right!"

Ten minutes or so later we might repeat the conversation. I think he always remembered what we had already talked about. He just couldn't think of anything else to say, but had to say something because he loves to talk and be acknowledged. Sometimes he'd change the question and ask what car I drove. He's all about birthdays, cars, and watching football. My favorite part about Max was that he used to call me Princess Firefly when I was little. I still don't know why, but for a brief period in my life I enjoyed being called a princess.

Up until recently Max has been with his mom for his whole life. She took great care of him during an era where some people with special needs were sent to institutions. Not my cousin. He went everywhere with my aunt--to church, to McDonalds (his favorite) and to our house when my aunt came to visit. He always wanted me to help him in and out of the house and I would--with pleasure. It was always an honor to help Max as he held on to my arm as we slowly made our way to our destination. He always walks stiffly and probably is in constant pain, but he never has complained.

The two of them lived at home until a few years ago when my aunt's failing health dictated that they had to move to an assisted care facility--much to her chagrin. Her troubles started in the fall when she fell and broke her hip which often is not a good sign for the elderly. My last Christmas card from her was signed by one of her three adult granddaughters. Her daughter had put in a note saying my aunt wasn't rebounding from a recent set-back. For a short time during the holidays, she was in a nursing home separate from where her son was staying. I heard they moved her back with her son after I received the card, so I thought she was doing better by the time Christmas arrived.

However, when I arrived with husband and boys in tow for a visit just after Christmas, she wasn't in their apartment. I asked Max where she was but he couldn't or wouldn't tell me. Fortunately the mystery was solved when his sister (my cousin) came in and told me my aunt was in the hospital. My aunt had suffered another stroke. Her family began a round the clock vigil so she wouldn't be alone when she passed on. My family left the assisted care living facility and returned to my in-laws who live in the same county in Ohio. (We were visiting from Mt. Pleasant Michigan). Then I drove back to the county hospital, told Aunt Bessie I loved her and basically said my goodbye. I spent the rest of the evening at my in-laws with a wine glass in hand-- nursing a heavy heart.

I expected my aunt to leave us by New Years Day. She hung on (in quite a bit of pain) for six or seven weeks longer. Why? Was she worried about her son? Or was she just waiting for the right time? Whatever the case, she showed a lot of spunk by hanging in there for so long.

My aunt was 94 when she died, but there was something comforting about knowing that she was still in the world with me. She held on longer than anyone in her large family. The second child of nine; she was the last to go. She was especially close to the three youngest girls in her family. One of them was my mom. They all died before she did of natural causes. My one aunt (66) died in 1987; my mom (69) died in June of 1996 and my other aunt who was 75 died around Christmas time that same year.

My grandma and grandpa (mom's parents) only lived until their mid sixties. They died before I was born. Two of their girls died as infants and one son died at age 12 in a hunting accident. Their other two sons died in their fifties. My aunt far exceeded the average age of death in her family. I think she kept going for her son. She must have worried what would happen to him, although she never spoke of her fears.

Max is doing OK. People doted over him at the funeral home and he soaked up the attention. He wasn't stimming as I've seen him do (constant repetition of the same phrase) when stressed. He seemed calm and at peace. I guess he's had time to transition while she was in a nursing home away from him. She used to hover over him and correct him all the time, so maybe he started to enjoy some freedom. Anyway, he has his sister and plenty of nieces and nephews to look after him. He's a beloved family member who will continue to be looked after by doting relatives.

As for my aunt, I do know that she found it a bit lonely at the top. She didn't like being down the hall from the nursing facility where a friend younger than her was dealing with Alzheimer's disease. Most of my aunt's generation has passed on during the last two decades. She once looked at the paper while I visited her and said "well, I'm not in the obituaries, I must still be alive." I suppose finally making page 2 of her local paper on Friday and Saturday was a bit of a relief for her weary soul. I, however, will miss her terribly. Rest in Peace Aunt Bessie.


Casdok said...

So sorry to hear of your aunt, a very moving tribute to her, brought a tear to my eye.
And Max sounds wonderful, i hope he contines to be well looked after and happy.

J said...

Thanks Casdok. I'm pretty sad right now. I suppose there will always be a little tender spot there for my aunt. Yes, Max is quite a wonderful person. He's in a great family, which is reassuring.

mommy~dearest said...

I am sorry for your loss- your did a beautiful job representing what a special woman she was to everyone.

J said...

Thanks, my aunt was a great role model to look up to. She was sort of the grand matriarch of our family. Everyone loved her.

Elissa - Managing Autism said...

What a truly beautiful and touching tribute to your Aunt Bessie. Brought a tear to my eye too.
I'm sure she will always have a very special place in your heart.
And Max is very lucky to have such a wonderful family around him.

J said...

Thanks Elissa.