The 80s were my coming out party. College, girlfriends, more independence. It was a fun time. The 90s brought more stability to my life. My O.I. was under control. I was settling into work at the Manor. Mom was doing well. I continued to grow, both professionally and in many other ways.
For instance I became politically involved in my hometown. I advocated for cut curbs on every block and corner in town. It started with my very own street. I was a prisoner on my own block, unable to get off the curb independently. I wheeled to work every day, But I needed help simply crossing the street. Ridiculous!
I petitioned the borough to install cut curbs on my block. They resisted, saying there was no money for the project. I refused to take no for an answer. The recent passing of the Americans with Disabilities Act spurred me on. Under the law physical barriers now needed to be modified. Society just needed a little nudge in doing so.
Attitudes are tough to change. I addressed Borough Council one evening, asking for the curbs, not only for my use but for others in our community who may have a disability . The elderly could also take advantage of the lower curbs.
The answer was still no.
Ironically, after doing some research I found that cut curbs were originally planned for my housing development when it was built in 1977. For some reason they were never installed. So I was getting grief for something that should've been there all along.
A local contractor saw the story of my campaign in the paper and volunteered his services and material to fix the curbs on my block for free. Of course the borough let him do it.
I appreciated his help. Now I could be more independent. But what about the rights of others in our town who needed cut curbs?
It wasn't just about cut curbs. It was about all physical barriers which hindered someone with a disability and made it harder to get around. It was about awareness.
Pretty soon cut curbs and ramps started springing up all over town. Things snowballed and people got excited about making the town more accessible to everyone. Maybe it was the new ADA law. Or maybe folks just realized it was the right thing to do.
I began to become more aware of my own surroundings. Were there enough handicapped parking spaces? It was always frustrating when the special accessible spots were taken at the store, and the last one was filled by a guy walking out of his vehicle.
With the ADA law new buildings had to be accessible. Old buildings would need to be modified, if possible. Things were changing, in a good way, and a whole new world was opening up.
Around 1995 Mom was visiting the local pharmacy one afternoon and felt dizzy. They had her rest in a lounge chair until the ambulance arrived. I knew something was wrong when a my youngest brother Mark met me at home after work. Mom had a heart attack.
They considered doing Angioplasty but the blockage in her heart was too severe. Several arteries were clogged up to ninety percent. She needed quadruple by-pass surgery.
It would be done at the University of Pennsylvania Hospital in Philadelphia. I couldn't help but remember the many times I was transferred down the city by ambulance, unsure what would happen next. The thirty minute drive down the Schuylkill Expressway seemed like forever.
Penn was a maze of a hospital, much larger and more modern than the old Children's Hospital. I was glad Mom was at one of the finest hospitals in the world.
I held her hand the morning of the surgery. She counted her rosary beads in silence as we talked. God would listen to her prayers. She had been such a good person all her life.
I tried to be there for her as she had always been there for me. My siblings were in the room. But there is a special bond between a mother and a child with special needs. I offered encouragement and hope yet there were doubts in my mind that I would ever see her again. I was the one who needed extra faith.
Her strong, caring heart needed repair. Her heart had been through so much in those eighty years. She was a fighter and she made it through the by-pass surgery. I was scared when I saw her after wards, even though the doctors and nurses warned us what to expect. But every day she got stronger, and every day they started to take tubes and machines away. She was walking soon after surgery. In a week she was home.
Mom's recovery would take four to six weeks, at least. I was doing the best I could at home. First time alone. I ordered out or went out to eat and found that was really expensive . Keeping the house going, making sure the bills were paid, the normal things adults do were all new to me.
My siblings did what they could. One ran my dress shirts to the laundry mat. and dry cleaners. I still couldn't button the top button on my shirt ( because of my deformed arms- I never could touch my own shoulders), so my sister Phyllis came over before work and helped me.
It's true what they say about not really missing someone until they are gone. I was getting a taste of life without Mom. It was making me grow up even more. It would prove to be a valuable lesson down the road.
It began to sink in: Mom wasn't going to be around forever. I had to take things one day at a time, unsure of Moms' health, keeping one eye on the future. WouldIi ever be able to take care of the house on my own? Or would an accessible apartment work better? Jill wasn't going to be a part of my life so I needed to start thinking about life with Mom and life without her.
Life without her would be hard, even hard to think about.
At night I was alone. I locked up, turned out the lights and retired to my room. Louie, our new dog, a Pekinese puppy, joined me. I was glad to have company and protection. I thought I heard Mom come home from Bingo, like usual, and poke her head in my room. If I was awake she would tell me if she had won that night. Good night, Mom..see you in the morning. But she wasn't there.
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