Being Number Six

All my life, I have been referred to as “number six” by my father. Dad used numbers to describe me and my five older sisters whenever he spoke about us to others. Sometimes we would be at a party and he would call us over to introduce us to a friend.

Have you met Caroline? She’s my number five daughter. Caroline – come over here!

When my parents were first taking me to medical appointments to determine the cause of my disability, Dad always pulled out his wallet whenever the nurse or social worker expressed astonishment upon learning I was the youngest of six girls. Beaming with pride he would flip through the photographs in the plastic sleeves, naming us and offering a tidbit of information he felt important to share.

That’s Susan, number one. She’s pregnant with our first grandchild. And Mary Jane, number two. She’s studying to be a violin teacher.

Photo of six white women varying in age and their elderly parents. One of the women, the author, is seated in a wheelchair.

Dad always said he didn’t care what jobs we did when we grew up, as long as we we did them to the best of our abilities and helped others along the way. When he bragged about us to my orthopedic surgeon, he was as proud of Donna as he was of Sandy.

Smart girls, both of them. All of my girls went to college, and hopefully Denise will too. 

Dad had his favorite stories about each of us. When we gathered as a group for a family dinner or celebration, he would reminisce and share his memories with whoever happened to be around the table. It didn’t matter if you had heard the story many times before, you still laughed when he talked about the time he sent the “five girls” (how he always spoke about my sisters before the time I arrived) outside with a gallon of white paint so he could watch a football game in peace and quiet while they painted the fence. My mother arrived home later that afternoon to find my sisters had used an entire can of paint on just five feet of fence, but also on the grass, rocks, their hair and clothes.

You should have seen her face! She was fit to be tied. You girls were covered in paint.

I was an adult before I realized how much Dad had worried about me. As a child, I never knew he was anxious about whether I would become ill, or if my disability would shorten my life. Then last year at our annual DiNoto cookie bake, he took my hand as I was telling him about work and gave it a squeeze.

Well Niecie, I guess I don’t have to worry about you dying young anymore.

I was stunned, but tried to laughingly reassure him I was doing just fine and was now too old to be considered young if I were to die. While I squeezed his hand in return, I asked if he was still truly worried about me that much.

When you were little, they couldn’t tell us much about what to expect for you. I’m your father. I worry about not just you, but all my girls, all the time. It’s what dads do.

That was the last time I saw my father in person, the last time I held his hand, the last time he pulled me in for a hug and kiss.

Three weeks later, my phone rang as I was returning home from my early morning swim on a cold December morning. When the caller ID on my phone read “Mom and Dad” but Caroline’s voice came through the line, I knew something was wrong. Caroline’s voice cracked as she told me Dad had died. I don’t remember much of the rest of the conversation, probably because some of the other sisters were trying to call me and my phone kept beeping with incoming calls.

The day passed in a blur as I made plans to leave for a week in my hometown. I washed and packed clothes, wrapped Christmas presents and prepared cookie trays while fielding calls and texts from friends and family. Eventually I crashed in bed, exhausted from crying on and off all day. I fell asleep reviewing my mental list of what was left to pack in the morning.

I dreamed about Dad that night. He was getting ready for a fishing trip. I was a child, standing next to the pile of his gear, watching as he packed the back of his truck. When he was done, he slammed the tailgate. Turning to me, he smiled and tucked my hair behind my ear.

Don’t worry Niecie. I’ll bring back enough for all of us.

 

 

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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?

The Citrus Peeler

This past weekend I sobbed because of a citrus peeler.

You’re right. It really wasn’t the fault of the peeler. But the sobs snuck up on me when the peeler was in my hand, so it’s a convenient excuse.

Wait, you don’t know what a citrus peeler is?

A citrus peeler is a plastic tool used to help peel citrus fruits. I know, you got that from the name. It has a sharp cutting hook on one end that can be used to slice through the skin of an orange, or in my case yesterday a grapefruit. The other end is a thin, slightly curved, flat piece of plastic which can be used to peel a section of peel away from the fruit. You use the cutting edge to make slices down the sides of the fruit, then peel the sections away with the peeler.

A blue plastic citrus peeler.
My citrus peeler.

Do you need a citrus peeler to peel an orange or grapefruit? Of course not.

However, my father used to swear by his peeler. From the first time he brought one home around the time I was ten years old, he rarely peeled an orange without it. He enjoyed his citrus peeler so much, he bought an extra just in case his trusted peeler broke.

When I was a teenager, Dad would grab his citrus peeler and an orange at night when we sat on the couch to watch Jeopardy! together. We would share the orange while I shouted out answers, trying to beat the contestants. Sometimes, mouth full of fruit, I would frantically wave my hand at the television, moaning when I knew the answer but the contestants got it wrong. Dad would laugh and shake his head.

If you ever make it on the show Neecie, don’t bring any food.

Yesterday, I sat watching a movie, a half peeled grapefruit in my lap, sticky citrus peeler in my hand, and it hit me. I eat fruit this way because of my father. Without warning, the memories of shared snacks came at me.

Grief is sneaky like that. You can be perfectly calm, doing something mundane like peeling a grapefruit, and all of a sudden you find yourself unable to breathe because your insides are being twisted by a crushing vice. I feel as if it waits for you to delude yourself into thinking you’re managing. You’re in your routine, coping as best you can, not mired in overwhelming feelings of loss, and BAM! Like a coiled cobra, grief lashes out and strikes, the venom paralyzing you in a heartbeat.

Which is how I found myself crying over a grapefruit yesterday, holding a sticky citrus peeler. And once the floodgates opened, they didn’t close.

After Dad’s death in December, I knew eventually I would have a melt down. I thought it might happen on his birthday in January. When it didn’t, I thought maybe I’d break down when I next visited his grave. I never expected it to happen on a Sunday afternoon in March while I peeled a grapefruit.

I’m sure it will happen again. I wish I could say that it won’t. But grief doesn’t work in neat, predictable patterns. Next time it may be something other than the citrus peeler. I hope it is, because I’ve cried enough tears over that!

 

30 Days of Thanks Day 29 – Donna

I share many traits and have many similarities to my five older sisters. People tell us we look alike, sound alike and talk alike. We all played musical instruments and were active in school music groups. And we all love to read.

My sister Donna is one of my regular reading buddies. Donna is fourteen years older than me, and I’m certain she is one of the reasons I love to lose myself in a good book. I often joke that my older sisters taught me to read at a young age because they were tired of reading to me. Donna would come home from college and I would pounce on her, begging her to play with me or read to me. Often, playing involved Donna curling my long hair, partaking in a tea party, and then reading as many books as I could convince her to read.

Donna and I regularly swap book and audiobook recommendations. Donna understands that a good book can be a valuable escape, and I have done my best to escape a great deal this past year. I told her about Tina Fey’s Bossy Pants, which I listened to during my stay at Sunnyview Rehabilitation Hospital. She told me about a Jack Reacher mystery. We discussed Daniel Silva’s characters on the phone while I was recuperating at home. She mailed a copy of a book about a group of friends who start a cookie swap.

Donna lives in Florida, so I see her about once a year. Our visits are never long enough, but Donna does a wonderful job of staying in touch because Donna is the best card giver in the world. I don’t know how she does it, or how much time she must spend looking through the racks of greeting cards to find the perfect card. But, she always manages to get cards which are just right for every occasion.

This year, Donna sent me funny cards when I was in the hospital and needed a laugh. Then, one day when I was particularly low, a note of encouragement showed up with her return address on it. Sometimes Donna’s cards contain newspaper articles she has read which remind her of me. She surprised me with a clipping about a friend of mine, a former Ms. Wheelchair Florida, who lives about an hour away from her home. The penguin bookmark she sent me is inside a book next to my bed.

Five years ago, Donna flew up for my nephew’s wedding in Ticonderoga, NY. After a beautiful fall day on the shores of Lake George in the Adirondack mountains, I followed Donna and our sister Sandy into town where we had reservations at a local hotel. What followed was an adventure that still cracks us up – involving a convenience store restroom, men dressed in British Redcoats a la the American Revolution, the three of us sharing a king size bed at a Super 8 Motel, and getting lost in the village. We still laugh until we cry when we talk about the night we spent a weekend in Ticonderoga. I bet you she’s laughing right now after reading this.

Donna always makes me laugh. She brings so much humor into my life, making me realize there is always a reason to smile even when facing difficulties and obstacles.

Thank you Donna, for being a bright spot so frequently this year. I love our book discussions, even though my “to read” list grows every time we talk. Your little gifts make me think of you, bringing you closer to me even though you live far away. I am grateful you are not just my sister, but one of my dearest friends. I do my best to emulate your generosity and compassion for others. I just wish I had time and patience to find perfect cards for you. This post will have to do for now.

A woman seated in a wheelchair wearing a long pink dress and a pink shawl sits next to a woman wearing a black dress. The woman in the wheelchair has brown hair and is wearing glasses. She has a camera on her lap. The woman standing next to her is holding a glass and a blue shawl.

30 Days of Thanks Day 26 – Mary Jane

Today is the annual DiNoto Cookie Bake, a day my family gathers to start our holiday baking. I have written about our annual tradition before in this post. The day started in 1990, while I was living in Australia as an exchange student. My mom was missing “her baby,” so my sisters Donna and Caroline suggested they join her for a day of baking cookies. Twenty-six years later, we still gather on the Saturday after Thanksgiving at my sister Caroline’s house.

My late sister Mary Jane loved baking with her sisters. When we gathered together each year Mary Jane made the Russian Tea Cakes, pecan shortcake balls rolled in confectioner’s sugar, and the chocolate thumbprints, a recipe from our Grandma DiNoto. Mary Jane’s Russian Tea Cakes were perfection – buttery goodness that melted in your mouth.

Mary Jane joined us for the last time at cookie bake five years ago. She arrived with her youngest daughter Karen that Saturday morning, shortly after Mom had finished the first tray of her oil cookies. Before Karen even had even removed her coat, Mary Jane had her apron out and was asking Karen to tie it behind her back. A few minutes later, Mary Jane’s oldest daughter Sara surprised us when she arrived with her family.

That last year Mary Jane, who never ate cookies during our annual cookie bake, tested each and every type of cookie we made, smiling her enjoyment with each mouthful. She rolled the Russian teacakes in sugar, put mini chocolate chips in the chocolate thumbprints, and gave directions to Karen when Karen helped fill the kolachki cookies. Other family members stopped in throughout the day and many photos were taken. It was the last time all six DiNoto girls were together as Mary Jane died one month later.

Cookie Bake 2012, the first year we baked without Mary Jane, was emotional. More than once, we had to take a break to shed a tear or offer each other a hug. But, that year was also full of joyfull moments like watching Emily, Mary Jane’s granddaughter, having a tea party with her Noni, my mom, or laughing when Mom put an apron on Sara’s husband Will. We did our best to soldier on as Mary Jane would have wanted us to, knowing the day has never really been about the cookies. It wasn’t until after lunch that we realized nobody had made Russian teacakes or chocolate thumbrints, the recipes Mary Jane had always been responsible for at our annual Cookie Bake.

Mary Jane was admitted to inpatient hospice a month after Cookie Bake. I spent several hours at her bedside each day for the week she was a patient. As I helped her eat soup the second night, she told me she had always wanted to write a book about her sisters. I sat with tears streaming down my face, her strong hand clasped in my weak grip, listening to her talk about her writing dreams. Then she asked me to make her a promise.

You have to do it for me. You have to write it. Promise me you’ll write the book. And stop crying!

It took me a couple of years to work up the courage, but this year – a year of one challenge after another – I am finding refuge in writing. I have an outline, and I am spending time each day writing some of our sister stories. I hear Mary Jane’s quiet voice in my head encouraging me to write, and I’m doing my best to honor her spirit and the promise I made.

Thank you Mary Jane, for helping me find a purpose for my writing. I hope I tell our sister stories in a way which would please you. I am grateful for the chance to share memories which keep us connected. Although many of them cause me to cry at my keyboard, they also make me smile. We all miss you so much every day, but especially today – a day you always enjoyed when we were together.

Today, as we measure flour, sugar and butter, we remember we are surrounded by that which can never truly be measured. Love and support from family and sisters mean more than the confections we create as a group. We carry on with traditions, relishing memories while welcoming new bakers into the fold. Mary Jane’s son and daughter-in-law are joining us today for their first Cookie Bake, reminding us part of our dear sister is still with us whenever we gather as a group.

Mary Jane and Denise - Photo of the author, a woman in a wheelchair, and her sister. Both women are wearing green Santa hats and holiday aprons over red shirts.
Mary Jane and I, matching and sporting aprons made for us by our sister Donna. Photo courtesy of S. DiNoto.