Out of the Mouths of Babes

Friday night was special. I spent the evening with family celebrating my great niece’s seventh birthday. Seven is a fun age, and her party was packed with things a seven year old girl would enjoy – pizza, new clothes for her doll, and a three layer cake covered with pink frosting and chocolate chips.

One of the reasons I enjoy family events is because of the laughter and love we share whenever we are together. Emily, the birthday girl, and her younger brother Evan who is four years old, kept us smiling all night. But it was an exchange that happened early in the party that continues to play in my head.

I was sitting with my sister Sandy when Evan approached us. Like most children, Evan is intrigued by my wheelchair. When he was younger, he was content to simply ride on my lap. Now he is determined to figure out how the controls regulate the various aspects of my chair, such as speed and seat elevation. Standing next to my chair, he displayed remarkable restraint keeping his hands at his side rather than reaching for my joystick. Suddenly, he turned his quizzical gaze to Sandy and this delightful interchange took place.

Evan: Aunt Sandy, where’s your wheelchair?

Sandy: I don’t have one.

Evan: Why not?

Sandy: Because I don’t need one yet. Maybe someday I’ll have one.

Evan: (looking delighted and excited, and clapping his hands) Then you’ll be twins!

The three of us laughed as Sandy picked up Evan for a hug. The party continued, with pizza, presents and cake. But Evan’s comments stuck with me and caused me to reflect as I boarded the bus to go home.

At four years of age, Evan already knows that a wheelchair is a cool piece of equipment. He does not view me with pity. He does not perceive a wheelchair or a disability as being a Bad Thing, with a capital b and capital t as said by the late, great Stella Young. Of course, he doesn’t understand all the intricacies of life with a disability because he is just four years old. But he understands critical information other nondisabled adults seem slow to grasp, such as:

  1. I am my own person.
  2. My wheelchair is not the worst thing in the world, or a reason to shy away from me.
  3. I do not have a poor quality of life.
  4. I am capable and competent.

Evan is not unique in his abilities. All of my nieces and nephews, and now their children, have been exposed to my wheelchair and my disability their entire lives. They have all developed a level of disability cultural competency through their interactions with me, a disabled family member. This has created a level of comfort with disability at a young age in many of them which their peers may not have developed.

When I am with my young family members, I don’t hear negative comments about disability. I don’t hear pity. I don’t hear insensitve or ableist comments like the ones I hear from strangers on a regular basis, such as:

You manage that thing pretty well!

Slow down – you’ll get a speeding ticket!

You got snow tires for that thing?

You’re so pretty for someone who uses a wheelchair.

Oh, you work?!

And my personal ‘favorite’…

I don’t know how you manage. If I had to use a wheelchair, I’d kill myself.

My young family members who have been exposed to my reality as a disabled woman say different things. They say things like:

That man has a red chair like Aunt Denise’s!

Maybe you could drive us to skating when you get your new van Aunt Denise.

Will you read to me Aunt Denise?

We put the ramp down for you Aunt Denise!

And my personal favorite…

I love you, Aunt Denise.

If my young nieces and nephews can understand disability is not the worst thing, why can’t more adults figure it out?

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30 Days of Thanks Day 28 – Guest Post by Via Mari

My final guest for this month is Via Mari. We “met” through an online writing group and learned we shared a love of travel. I enjoy learning about Via’s research process, and the importance of keen observation when it comes to getting the details right when describing a location in writing. I am excited to share her gratitude post as we near the end of 30 Days of Thanks. You can read more of her work, including descriptions of her books and insights as to how she researches her writing, over at her blog.

Thankful for Memories

When I think of thankfulness so many things come to mind, but as I ponder what I am really thankful for this year it has to be my memories.

As a young girl, I recall waking up in England and following the scent of mom’s baked goods down the stairs to the kitchen below. The large walnut crank- out table was the place we gathered to eat the sweet, flaky pastries and drink the robust black tea which mom always cooled slightly for me with a little milk and sugar.

As a teenager, I recall shopping with mom for special occasion dresses. It’s the laughter and the fact that I could tell her anything that I remember so vividly. We would spend hours talking through all life’s little troubles as we went from boutique to boutique. Together we would search until we found the perfect dresses. The little frilly red and white ones for holidays and pictures with family, a long pale yellow formal for my first dance, and a flowing midnight blue sparkly strapless for prom and another short, more sophisticated black strappy dress with sequins for the young woman who was about to graduate. Then it was the wedding dress, the ultimate pursuit. Bridal shows, boutique after boutique, day after day of laughter and talking until we found the simple, classic white dress I would be married in.

As a young woman, I recall my children enjoying the same holiday customs I experienced as a child. My mother’s traditions of baking Gramma’s homemade yeast rolls from scratch, the sausage and apple stuffing which would be lovingly prepared to accompany the turkey, and engaging them in the laughter and conversation that was always so much a part of the day.

As a woman today, I sit quietly watching my mom interact with our extended family. I am thankful for all the memories we are making and that I will have the ability to look back and remember every extraordinary thing about my mom today.

30 Days of Thanks Day 24 – Caroline

Until I was born, my sister Caroline was the youngest DiNoto sister. I usurped her position as “the baby” when Crinnie, as we all call her, was eleven. Because she is the closest to me in age, and the only one of my sisters who has always lived in our hometown, I spent more time with her than my other sisters while growing up. Now that we are “grown ups” (I use the term lightly when applied to me), I am proud to call her one of my closest friends.

Over the years, Crinnie has taken steps to ensure I am able to remain fully involved in our family activities. In 2007, when I fell and injured my leg, she bought a fully electric hospital bed so I could recuperate at her house over the Thanksgiving holiday. That was the first year I spent Thanksgiving with her and her husband’s extended family, a tradition I have continued for nine years now.

When Crinnie and her husband Paul built their new house in 2008 on a country road outside our hometown, they incorporated visitability and accessibility into their plans. Their house has a ramp, accessible toilets, pedastal sinks, wide doors, lowered light switches, raised outlets, lever door handle sets, and other modifications which make it a wonderful refuge for me.

We wanted to make sure you always had a place to come home to.

This year, Crinnie made it possible for our parents to see me while I was in the hospital. Our elderly parents do not drive the distance from our hometown to the city where I now live. Crinnie brought them up to visit me twice – once right after surgery and again while I was at Sunnyview Rehabilation Hospital.

Mom wants to see her baby, so I told her I’d bring them up on Sunday. Is there a room we can use for lunch?

Crinnie, Mom and Dad arrived after my physical therapy, just before noon the following Sunday. Knowing pasta is my comfort food, Mom made a dish of rigatoni, meatballs and sauce. Crinnie made a delicious salad, and the four of us had a lively picnic in the patient lounge. For three hours, I was able to escape from the reality of rehab as we talked and laughed. And just because I’m in my 40’s doesn’t mean I don’t feel better after a hug from my mom and dad.

Eventually, I returned home to face the reality of a new way of doing all my daily tasks. My restrictions meant I was no longer able to use a regular toilet, and required the purchase of a specific bedside commode and transfer board. I told Crinnie I would not be able to come visit and stay at her house without this equipment, unless I found a way to safely use a regular toilet.

Well, can’t we just order what you need? Tell me what to get so you will be able to stay.

Crinnie ordered the commode, and learned how to transfer me using my new transfer board. This allowed me to double the locations in which I could go to the bathroom – my home and her house. It also allows me the opportunity to join the family feast once again today for Thanksgiving, and means I don’t have to miss the annual DiNoto Cookie Bake this weekend with our parents and sisters.

If you are a regular reader and comment on this blog, you have seen Crinnie’s comments. She is by far the most frequent commenter here, which makes sense as she has always supported my writing since I was a child. I know I can count on her honest feedback whenever I call to read her a work in progress. She is a great editor, often catching irregularities I miss or offering suggestions for improvement. Crinnie first heard this post when I read it aloud to her last night while she was busy preparing food for today’s feast.

Crinnie – thank you for being one of the best big sisters a girl could ask for. Your sacrifices this year have kept me involved in family activities, which has helped the healing process. I know from my disabled peers this does not always happen in families. I appreciate all you do to assist me with daily activities whenever I stay at your “inn on the hill.” Your support and love make my world a brighter place, and I can’t think of a better person to recognize with this post, the 300th post on my little blog.

Two Caucasian women smiling at a camera. The woman on the left is wearing a blue v-neck dress under a black cardigan sweater. The woman on the right is wearing a white turtleneck under a purple cardigan. Both women have brown hair and glasses.

30 Days of Thanks Day 17 – Sally (and Her Family)

Last year, I thanked my friend Sally as part of my 30 Days of Thanks. You can read about our friendship in this post. Sally, along with her entire family, deserve a mention this year because I would not be where I am today without their friendship, support, and assistance.

After the x-ray confirmed that my leg was broken and I was admitted to a unit in the hospital, my sister Sandy sat by my bed and asked if she should contact anyone else. She had already called my parents, sisters and Personal Assistants. She cocked her head and asked if she should call Sally. It was approaching the time of night when most people get ready for bed and I knew Sally would drop whatever she was doing when she heard I was in the hospital, so I asked Sandy to wait until morning.

Sure enough, Sally came the next day – and every day after that for the duration of my 14 day hospital stay. When Sally couldn’t make it, her twin sister came to visit. They assisted the nursing staff with positioning me in bed, completing bed baths, eating meals, and getting on and off the bed pan. Sally and her sister are nurses, and they queried the nursing staff regarding medication and treatments when I was sleeping or too spaced out on pain medication to remember. Sally slept in my room for several nights before the hospital provided bed controls I could independently operate.

Sally and her sister work in hospital settings and know small things can make a world of difference. They brought me real tissues, face cleansing cloths, and lotions. On the night my appetite finally returned after a week and a half, Sally smuggled in a burger and fries then helped me sit upright on the side of the bed for the first time so I could feed myself.

When it was time to move to the rehabilitation hospital, Sally was there to accompany me on the transition. She went to my apartment to gather clothes, toiletries and my tablet, watered my plants, and brought me all the packages and mail which had accumulated at home over two weeks. Did I mention that Sally started a brand new job while I was in the hospital, and still managed to find time to do all this?

I needed to have someone stay with me at night for the first few days at home, and once again Sally was there. She spent the next three nights at my apartment with me as I adjusted to my new normal. Sally helped me train my Personal Assistants on new transfer techniques. She was an extra pair of hands the first time they attempted to help me in and out of the shower.

Knowing that I faced an unexpected absence from work, and unplanned expenses related to purchasing new durable medical equipment, Sally’s husband coordinated efforts to assist with financial burdens. These gifts, which surprised and humbled me, made it possible for me to concentrate on recuperation without the anxiety of meeting my regular living expenses.

Within a month of being at home, I realized I would need to move out of my apartment to a location closer to public transportation. I started to pack using boxes provided by Sally’s sister. Sally and her family helped with every aspect of my move – painting my new bedroom walls, packing and moving boxes, cleaning my old apartment, and unpacking my belongings at my new place. Sally’s nieces carried boxes. Sally drove the U-Haul truck. Sally’s husband drove more of my belongings in his truck and carried furniture into my new place. If you ever need to move, Sally and her family are pros!

Sally and her family have made it possible for me to move forward this year when I might have otherwise struggled. Their continual help has been a blessing. I am grateful they have welcomed me into their hearts, and appreciate all they have done to ensure I am able to remain independent in the community.

30 Days of Thanks Day 11 – My Favorite Veteran (and Veterans Everywhere)

You were so kind earlier this week when I wrote a repeat post about my mother. I decided to push my luck and focus today’s gratitude post on my wonderful father Sebastian, or Sam as he is known to everyone. Yes, I’ve written about him before. Rather than repeat what I have already written, I hope you will read this post or this post to learn more about him. Most of what I know to be true about service to others, I learned from Sam.

My father taught me everyone has the capacity to be of service, to do something to improve their community or the world. Dad served my hometown as a Rotarian, a businessman and as a member of the Knights of Columbus. He volunteered to serve senior meals to seniors who were sometimes younger than he was. Dad drove his friends from church to and from medical appointments.

For almost thirty five years, my parents hosted an annual picnic on Memorial Day weekend. To the frustration of my mother, who would be planning details, Dad would invite people to the party up until the day of the event. It was not uncommon to be walking out of church with him, encounter someone and hear him say, “Whatcha doing on Sunday? We’re having a picnic and you should come – just bring a dish to pass!”

Mom would sigh, and I imagine she was mentally calculating if she had enough paper plates and napkins. Dad wasn’t concerned about the details. He is the type of person who doesn’t want anyone to not have a place to gather with others. Dad’s hospitality is what many of my friend’s comment on when they ask me about my parents.

Dad involved me in his community service when I was young. In elementary school, I accompanied him in the afternoons when the Rotary club painted the Scout House. In high school, I worked at his side scooping ice cream at the annual General Clinton Canoe Regatta, my hometown’s one big event. I sold tickets at the church chicken barbecues which were held to raise money for various projects.

Thank you Dad, for encouraging me to do whatever I can to help those around me. Through your example, I learned the value of commitment to the service to others. You taught me that everyone can do something, and that even small acts can have a large impact.

Today, a day we honor Veterans who have served our country, I would like to express my gratitude my father (who served in the US Army), my uncles, my brother-in-law, my nephew, my cousins, and my friends who have served or are serving. Thanks to you, and millions more, I am able to enjoy the freedoms and rights I take for granted. I appreciate the sacrifices you make for your country and its citizens. I may not always agree with my country’s policies and positions, but I always have the utmost respect for the men and women who willingly don the uniform each day and perform their tasks with professionalism and integrity.

Black and white photo taken circa 1946 of a young caucasian man wearing a uniform of a private in the US Army.
My favorite veteran.