A Father's Day Gift: They call me "Papa"

Over the years I've been called many things, but after six decades on this planet I'm especially proud to be called "Dad" and "Papa."  Dad, because that's what my children, "D," my daughter, and  Jimmy, my son, call me; and "Papa" because that's what my grand kids call me.                               

I have been paralyzed for more than 35 years and never thought I'd live this long or experience life in full color, ranging from the darkest of storms to the richness of a rainbow. 

After a storm, if you look for it,
you'll find a rainbow of new perspectives.

I never thought I'd have children, let alone grandchildren. Both are a joy to have, but the experiences are different.

With our own children, my wife Maggie and I felt the sense of excitement and joy, but also the deep sense of responsibility.  We also had new responsibilities other than ourselves as there were two other members of
our household that we had to feed, clothe, nurture, educate  and guide. Most parents feel this as well.

When your children start their own families it's different because you're not the primary caregivers for your grandchildren as you were with your own kids -- but you still care. You're invested in your grandchildren's success. And, in my family there was one more factor: while living with a disability, children will eventually notice that you're different.

We're a Family Too

From left, my daughter "D,"Maggie,

Jimmy and Papa.

As my kids grew up, we did things other families did, sometimes even more than other families did, such as going to the beach at the Jersey shore,  dining at restaurants and fast food establishments, as well as attending school events as most people do. As our children got older, we took them to sporting events -- soccer, football and baseball games - - and we did our best to get them to the Broadway theater in New York City once each year.

These events and activities were part of our family values. In our  family, this way of life was "our normal" -- with me -"Dad"- in the wheelchair doing "normal" activities with my family. On many trips, I drove my "handicapped equipped van" to our destinations. When I couldn't drive, Maggie would drive the van. In my family, my disability was our "normal."

What I couldn't control was how other people perceived my family and me.  When Mag and I began dating, she noticed people staring at us wherever we went -- a disabled man with an ablebodied woman -- or I should say a beautiful ablebodied woman. This happened all the time.

Jimmy is now in his mid-twenties and

serves our country in a civilian capacity.

When my daughter was about six, she noticed that folks were staring at us as well. She then asked, "Mommy, why is everyone staring at us at the Mall?"  Eventually we all became used to it and didn't even notice it anymore -- that is, until Jimmy noticed it when he turned eight.

One day when Jimmy got off his school bus, his Mother was waiting for him as she did every school day. He usually hopped off the bus with excitement ready to play with his friends after school. On this afternoon, however, he got off the bus slowly with his head down and walked pensively over to his mother.

"What's wrong?," said Maggie. Jimmy looked up at her, clearly upset, and said: "The kids on the bus kept telling me that Daddy is crippled.  Is Daddy crippled, Mom?"   That was a sobering night for all of us.

"Papa, why can't you open your hands?"

With the birth of my first grand daughter, I thought about how to engage with her the day she was born. I knew I couldn't hold her, hug or even take turns to feed her like her parents or my wife could.  My paralyzed arms and hands were just not what they used to be. So, I decided to leverage my voice and smile to engage her. I did the same with my second grand daughter when she was born. 

Over time, both grand children knew my voice and tone. I spoke to them with inflection and facial expressions consisting of smiles and moderating my voice. Today both girls understand my sense of humor and are comfortable with me.

Just a few short months ago the oldest grand daughter asked, at the dinner table, why I couldn't open my hands, as they are always clenched in a fist. I briefly explained that Papa had an accident and couldn't "open my hands."  She said, "Ok, Papa." She then got off her chair, walked over and hugged my leg while I sat in my power wheelchair.

Since that time, just a few short months ago, one grand child sits on my wheelchair footrests and the other now climbs on my lap for rides around their home. I also get hugs and kisses from both girls whether I ask or not. Hugs and kisses just make the world go 'round!

(Web photo) The world is a melting pot of families

that live and thrive with a family member with a disability.

I can't emphasize enough how "normal" this makes me feel, since I'm paralyzed from my chest to my toes.  Children may very well be our greatest example of  how to embrace those who are different, including people with disabilities. But more than that, children may very well represent how we should embrace each other as members of the human race  -- regardless of our differences.

                                                               
                                                                           ###