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.

 

 

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.

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 13 – Susan

 

Susan is the oldest of my five sisters, eighteen years older than me. Although all six of us resemble one another, she is the sister I am closest to in appearance. I don’t have to wonder what I will look like eighteen years from now. I just need to look at her. Although, I’m fairly certain I already have more laugh lines and wrinkles than Susan does. If I were to say that to her, I know she would respond by telling me I’m not applying my eye cream correctly with the third or forth finger of my hand. Susan has helpful hints for just about everything.

Susan has always supported me with cards and letters of encouragement. When I was an exchange student she sent me a card telling me that whenever she missed me, she just had to look up at the moon and remember I would be able to see the same moon too. After hearing me talk about a difficult clinical practicum in college, she sent me a letter reminding me of the importance of both good and challenging experiences that help shape us into the professionals we become. As soon as I announced I was trying to make it back to Australia, Susan sent me monthly cards and letters with gifts to help me prepare for my trip. She may not remember all those letters, but I have drawn strength from them.

When I came home from the hospital in February, Susan told me she planned to come for a visit. I was overwhelmed with everything life had thrown at me – a new way of doing all of my daily activities, new Personal Assistants, the loss of independence, and the reality that I would need to move out of the apartment where I had lived for twenty years.

Don’t stress about me coming. I’ll just show up, cook, and help you organize!

Sure enough, Susan arrived one Saturday morning with enough groceries to feed a small family and a smile. Within an hour, we had both eaten breakfast, a pot of tomato sauce was simmering on my stove, and she was ready to help me tackle the overwhelming pile of clutter covering my dining room table.

We spent the day organizing my mail and receipts, talking about everything and nothing, laughing over cups of coffee. Susan made me two pans of lasagna, one to have for dinner and one to freeze for later. She listened without judgement as I shared my fears about all the changes in my life, and handed me tissues when I cried over our afternoon tea.

My day with Susan was a perfect cure for what was ailing me at the time. She was a calm presence when I was feeling chaos and out of control. She was the voice of reason when I was spouting off about worse case scenarios. Susan was, as she always is, strength when I was weak.

After Susan left, I realized that our day together was the first time the two of us had spent an extended amount of time together alone. We see each other at family gatherings, but other than our day together this year, I have never spent any time with Susan without other family members present. Part of this is due to the age difference – Susan got married and moved out of our parents’ home when I was nine months old. Some of it is due to geography – Susan has lived in another state since I was ten years old. My disability also limits our time together because Susan’s house (though lovely) is not accessible, and I cannot travel as easily as I once did.

Yet, Susan is one of the women I rely on and admire most. She is there whenever I call to listen when I just need to vent, or to help me problem solve when I am ready for action. I don’t know as I have ever told her that, so I am glad to be telling her now.

Susan – thank you for making time for me, not just this year but every time I need a big sister and a friend. You have always believed in me, and have never been shy about telling me to dream big. You are a woman of kindness and generosity. Your passion for social justice and your devotion to education and literacy for all serve as examples to those us who look up to you.

All of my life, whenever Dad was annoyed by my stubbornness, he would look at me with exasperation and say, “OK, Susan.” As a child, I was put off by this, constantly correcting him that I wasn’t Susan, I was Denise. Teenage Denise probably rolled her eyes at Dad while sighing in a huff. Adult Denise sees it differently.

Susan, you are determined, dependable and not afraid to speak your mind or take a stand for the values you believe in. If Dad sees those qualities in me when he calls me by your name, I think I’m doing the right thing.

Two women wearing glasses smiling. The woman on the left has short brown hair with bangs, and is wearing glasses and a turquoise shirt. The woman on the right has her arm around the woman on the left. She has short brown hair and is wearing glasses and a black shirt with a teal shawl. She is holding a wine glass in her other hand.

30 Days of Thanks Day 3 – Sandy

In the past, when I have written thank you posts to my sisters, I have always written about them as a group. This year, I decided they each deserve their own gratitude post. Prior to this post going live, they did not know I was planning to do this. Susan, Donna and Caroline – you’ll have to wait your turn. Sandy gets to be first this time.

I am close to all of my sisters, but Sandy lives the closest to me so I see her the most frequently. She is listed as my emergency contact most often, and is usually the first person to get a phone call if something happens to me.

When I fell in January, Sandy was the first person I called. At least, I tried to call her. She had her cell phone turned off. Lying on my bedroom floor, writhing in pain as I waited for the ambulance to arrive, I attempted to search my contacts for Sandy’s work phone number. Who memorizes phone numbers these days? After two minutes of unsuccessful searches, I gave up and called another sister.

Caroline, I need you to call Sandy. I fell, and I think I broke my leg. You need to reach her and tell her I’m going to St. Peter’s. Please, just call her and tell her to meet me there.

Thinking over our relationship, I often call out for Sandy knowing she’ll come to my side if she can. Since I moved to the Albany area twenty-five years ago, there have been far too many of those phone calls.

I took my medicine and it’s making me fuzzy. I don’t think I can safely stand to finish getting dressed. Can you come over early to help me before you take me to the dentist?

My child language development class needs kids so we can practice administering tests. Would you let us test the boys?

My wheelchair stopped working in the middle of the intersection of 7th Avenue and 33rd Street. David helped me make it to the train at Penn Station, but can you meet me at the station at Albany to help me get home?

My PA isn’t able to help me go to bed/get out of bed/go to the bathroom/take a shower. Do you have time to help me please?

I have to bring cookies to my friend’s party. Can you help me bake tomorrow night?

I can’t stand being home alone. I’m driving myself crazy wondering why he said it’s over. What are you doing tonight?

Here’s the thing about my wonderful sister Sandy – she never turns me down. Even when I have a broken leg, and I can’t stop crying, and I keep snapping at her because I’m scared and in pain. Sandy is always there, doing whatever she can to make things better.

When I was admitted to the hospital in January, I was initially put on the orthopedic unit. Unfortunately, the electronic beds on the unit did not have controls mounted where I could reach them. I asked for a handset to control the bed, knowing I would need to move frequently to try to be as comfortable as possible and to reduce the risk of pressure sores. It was late at night and I was told I would have to wait until the next day to get a handset so I could operate the bed independently.

While I started getting angry, protesting this restraint, Sandy calmly asked the nurses for a recliner. She spent that first night in the hospital next to my bed in a plastic hospital recliner so I would have someone instantly whenever I needed to move or reposition my body. If I had to guess, I woke her up at least every twenty minutes to move my legs, my head, my foot, my arm, the pillow – you get the idea. I also cried, complained, and whined about the pain. I doubt either of us truly slept that night, but my memories of the exact events are rather fuzzy because I took as much pain medication as was allowed. The one thing I am certain of is that Sandy’s presence made it possible for me to make it through the night with fewer tears and less discomfort.

About ten years ago, Sandy and I started having discussions about our healthcare wishes. Knowing Sandy was listed as my emergency contact, I asked if she would be willing to act as my health care proxy if at any time I was unable to make my wishes known. At the time, I don’t think either of us suspected she would be called upon twice in the next ten years to be my advocate and relay my wishes to medical providers. But both times, Sandy did exactly what I would have wanted her to do even if it might not have been the choice she would have wanted to make. I couldn’t ask for anything more from one of the people I trust to act on my behalf should I be incapacitated.

Sandy has been a source of strength and positivity throughout my life, but I have appreciated it even more this year. She has been with me every step of the way as I worked to recuperate from my injury and regain my independence. Sandy brought me junk food when I was craving a burger, and homemade soup when I had a cold. She drove me to our hometown for family gatherings even though she really doesn’t like driving my van, and learned how to transfer me in a new way in case I needed her to help me at home.

Sandy continues to be one of my roll models, acting as an example of the kind of woman I want to be when I grow up. She juggles many balls – work, family, volunteer activities, friends, and more – but rarely do any of them drop. I’m sure she’s rolling her eyes now as she reads this, thinking she has me fooled.

The truth is, Sandy does a great deal to make life easier for those around her. I’m blessed to count her as not just a sister, but one of my best friends. Sure, I probably would have made it through this year if she were not a part of my life. But, I would not have laughed as much, dreamed as big, or reached for higher goals.

Thank you Sandy, for always being there, for letting me be me, and for loving me even when my clutter gives you heart palpitations and my lack of organization makes you crazy. I love you.

The author and her sister Sandy. Sandy is seated on the left, wearing a blue v-neck sleeveless dress and a pearl necklace. On her right sits a woman wearing glasses, an aqua v-neck sleeveless dress, glasses and a black necklace.

Sister Email

I am the youngest of Sam and Dolly’s six daughters. “The sisters” are the women I turn to for support, guidance, affirmation, information, and love. Susan, Mary Jane, Donna, Sandy and Caroline (and I suppose I need to include me too) all bring unique insights to every situation, even though we come from the same background. Each of us have different strengths and skills.

For example, if you want all of the sisters to know something, tell Sandy. She is a pro at disseminating information in a timely and efficient manner. If you want something organized – a party, your pantry, your dining room table – call Susan. If you want a laugh, just wait until you get the perfect birthday card from Donna. I truly don’t know how she does it year after year. Caroline, or “Crinnie” as we call her, is a pro at crafts and makes the best jams and pickles. And Mary Jane was always honest but never in a spiteful or mean way. As for me – well, I’m good at public speaking and explaining medical information in a crisis. You’d have to ask the others how they would describe me.

Over the years, we have adopted different technologies to stay in touch. For several years, all of us except Crinnie communicated by sister emails. Someone would start a note to the rest, and everyone would respond as time allowed over the course of a day or two. There were several emails which ended, “Now if only Crinnie had email we would be all set! I’ll call her to let her know what’s going on.” One of us would pick up the phone to pass along the latest and then respond to the rest of the group with any new input.

Around 2009, Crinnie joined the new century when she got the internet at her house. She quickly learned how to connect to email and ‘reply to all.’ Within a few weeks, she had learned about emoticons. “I can put a smiley face in, too. Aren’t you all impressed? :-)” Of course we were.

Sometimes the sister emails are used to coordinate sister gatherings. The flurry of notes planning our annual DiNoto Cookie Bake, held at Crinnie’s house on the last Saturday in November, occasionally starts in mid-October. The emails include a list of needed ingredients and our assignments, along with locations of good sales. We should be getting an update from Crinnie any day now.

These days, most of our messaging is done via text. A sister, usually Donna because she is an early morning person, will start a conversation early in the day about a topic. The rest of us will chime in as we are able. Even if we are replying to just one sister, we reply to all and it is up to the recipients to know when a sister is talking directly to you. Often, the topic will change without warning. I often say these strings of texts would make for an interesting study in sister dynamics to an outsider who is not familiar to us.

To illustrate, I offer you this actual series of texts from July which started with a question about chocolate crinkles. Hey – we’re cookie bakers. What did you expect?

Susan: I read the recipe for chocolate crinkles on Sandy’s blog. Then I checked my recipe. Maybe I copied wrong all those years ago, but I only use 1/4 c of oil, not 1/2 c.

Donna: My cookie book recipe calls for 1/2 cup

Me: I’ve never made crinkles.

Donna: (Photo of crinkle recipe in cook book) Some batches are better than others, don’t know why.

Donna: WHAT!!??

Susan: Try using 1/4 cup of oil!

Me: Never. Mare always made them so I never did. Sara makes them now, so I don’t!

Donna: I will because sometimes the dough feels soft, even after having been in fridge overnight.

Donna: Good for you Denise.

Susan: I made some tonight and rolled them in granulated sugar because I felt they would be too delicate to transport if I used confectioners sugar. They reminded me of those chocolate Archway cookies.

(Archway is a brand of cookies which were sold in the store my father managed)

Donna: And they are yummy! The Archway cookies. Remember the guy that rented the garage from dad?

Susan; Yes. And he was reported to the police by a busybody neighbor who thought it was illegal or some sort of Mafia activity.

Donna: Seriously? I don’t remember that, funny.

Susan: True. Because the delivery truck came at night. I remember the police coming to the house to talk to Dad. I’ll ask him on Friday. I’m going to take him up to the VA hospital.

Me: I remember “helping” George, the Archway man.

Donna: That’s his name, was trying to remember. Going to bed, will be in touch.

Sandy: Betty Crocker recipe online uses 1/2 cup. Tried to send link.

Sandy: Yes. Chief Payne asked Dad what was being delivered there. Dad asked him, ‘What do you think?’

Sandy: Dad told him if it was anything more he’d be driving a nicer car!

Donna: Too funny. Dad really does have a good sense of humor.

Crinnie: You’re baking @ 9:00 PM?

Susan: Yes!

Sandy: I was baking at 9 PM too last night. Tried a new lemon butter cookie. Tried to use a cookie press but it was a disaster so I rolled cookies out.

The discussion continued for the next week, although in between we talked about Mom’s skin tear, Dad’s appointment, the aprons my sister Donna made us, and the truck my brother-in-law drives for work. Then, two weeks later we got this message from Susan:

You know the old rule – always be sure you have all the ingredients before you start. Well, I ran out of vanilla so I added mint extract to the chocolate crinkles. Very yummy!

This just goes to prove that all the people who ever said the DiNoto girls never finish a conversation are wrong! It may take us weeks to circle back to our original topic, but we DO come co a conclusion. Eventually.

The Peace Lily

A white peace lily flower stands amidst dark green leaves.

I have heard other people talk about receiving visits from loved ones who have passed away. I always hoped family members might send me a sign after their death, but I never imagined my sign would come from a houseplant.

I am not a gardener. In truth, I am a plant murderer. I confess to being known as the cause of death for multiple species. My sister Caroline sent me a basket of plants as a gift when I turned 25, and friends placed wagers on how long the plants would survive, varying from three months to two years. All five plants were dead and gone within a year.

Despite my best efforts, I simply do not have the ability to keep plants alive. Something was different with the peace lily.

My peace lily, a sympathy gift from colleagues, arrived on New Year’s Eve, two days after the death of my sister Mary Jane. I was sitting in my dining room watching the sunset creep across the sky when the doorbell rang. I peeked outside and saw the plant. Three tall white flowers stood like sentinels above the waxy green leaves, obscuring the face of the delivery man.

My sister Mary Jane loved flowers. She sent bright floral arrangements to our mother each spring. She was a regular at a local elementary school’s annual plant sale, always looking forward to getting her pansies and peonies in the ground. Mary Jane once arrived with  carnations at my house, along with bread and milk, when I was too sick to shop. After a devastating diagnosis of brain cancer in her mid-50’s, she told me flowers from friends and family brought her sunshine and renewed faith when she had doubts.

Opening the peace lily card, I stared at the brilliant white flowers and wondered who would send ME, the plant murderer, such a glorious gift. The poor plant. The full lush emerald leaves could not know their days were numbered in the house of doom. I was appreciative of the thoughtfulness behind the gift but feared I would never be able to honor Mary Jane’s memory and keep this fine plant alive.

I performed the usual tasks, watering it and talking to it regularly. My sister Sandy helped move it to a larger pot where its roots had room to grow. Determinedly, I gave it every advantage I could in my efforts to help it survive. The plant was a link to Mary Jane, a means to somehow remain connected to her spirit. When I looked at the plant with its flowers still managing to stand at attention, I felt renewed faith I might endure the great grief and pain of losing one of my five sisters.

The first additional flower bloomed in late March, on the day our Uncle Bart died. I entered my house with tears in my eyes, having received the news on my way home, and saw the new white blossom opening above the leaves. A shiver ran through me, and I felt my sister’s presence as I exhaled a prayer of thankfulness.

It’s just a flower on a plant. It doesn’t mean she’s here.

But it doesn’t mean she’s not.

The flowers kept coming that year. The second flower arrived the same day Mary Jane’s granddaughter turned two. The third opened on my sister Susan’s birthday. The fourth appeared on Mary Jane’s wedding anniversary. When I saw two blossoms the day Mary Jane’s husband passed away from a rare cancer six months after Mary Jane’s death, I sobbed for an hour. Surely she was telling me they were together again. It was what I wanted to believe, and gave me comfort in my grief.

Somehow, my plant continued to survive – thrive you could say! Over the next year, I continued to discover flowers on meaningful days. Each time a new blossom appeared, I once again felt Mary Jane’s presence. The flowers served as reminders of the beauty which can still be found in darkness and grief, and faith which can help us weather overwhelming loss.

The peace lily is often given as a sympathy gift because the white flowers symbolize the departed soul finding happiness as it transitions from the physical to the spiritual world. During the year following her death, whenever a new flower bloomed, I felt I had received a message from my sister telling me her soul was at peace.

I have managed to keep this peace lily, Mary Jane’s peace lily, alive for almost five years now. Sometimes months will pass without a new flower. Then, when I am convinced it will never bloom again, Mary Jane sends me a reminder to keep the faith. The flowers always materialize on meaningful days. Last year, the only time the plant produced a blossom was the day our Uncle Tony passed away. This year I discovered a flower on what would have been her husband’s birthday.

I cannot explain why the flowers appear when they do. Folklore says peace lilies bloom when they are happy or content. I am skeptical any plant could be happy in my house, but I am willing to believe Mary Jane’s soul is indeed content. I know she is with me and my sisters when we share memories of our times together. And if I need a reminder to have faith our souls will meet again someday, new flowers ascend above the thick green leaves. These white flags of peace stand as the sentinels I saw when I first glimpsed the plant, watching over me and providing encouragement to soldier on.

The Importance of a Plan

April 16 was National Healthcare Decisions Day here in the United States, and I meant to share this post then. Even though it is a day late, the information is still valuable.

There are many times I am lazy. I don’t always sort my mail in a timely fashion. I often choose a good book over exercise. If the papers on my dining room table pile up for a week or two (or seven), I can live with that.

There are occasions when I keep my mouth closed. Granted, they are rare. But there have been instances when I did not share my true feelings with a potential romantic interest for fear of rejection. I have kept quiet in group settings so as not to delay progress towards an objective when I really had nothing additional to offer. This year, I have refrained from most political discussions.

However, when it comes to my healthcare and my wishes, I am never quiet. I wrote my first advanced directives when I was twenty-five. I have regular conversations with my doctors, friends and family about my health. They know my wishes, and thankfully have followed them each time I have needed them to speak or act on my behalf.

Last year, I wrote about my experiences relying on my healthcare agents in this post. In 2013 when I was unresponsive and ventilated in a coma for four days, my sisters and friends ensured doctors followed my wishes. They agreed to treatments based on the previous discussions we had.

This year, while I waited for surgery on my broken leg, I reviewed my wishes with my sister and friend who were with me at the hospital. There was an additional seriousness because we all remembered the last hospitalization. Again, my friends and family spoke up to doctors who only wanted to see a “wheelchair bound” individual instead of the active professional I am. When I was zonked out from the pain or medications, they gathered information and asked questions on my behalf.

Nobody wants to think about difficult times. Nobody wants to think about losing ability or becoming disabled by illness or injury. We avoid the conversations about end of life and disability because these things happen “later,” or to someone else, but of course not to us. We do not like to face our mortality or frailty. We are invincible, and we will be healthy until the day we suddenly die in our sleep.

Of course, life seldom works that way. We have car accidents or strokes. Our hearts, lungs and livers get diseased and fail to work. Or, someone who is supposed to help us get on and off the toilet drops us, and we break a leg. Wait, that may just be me…

The point is, there will come a time when you will need to make important medical decisions. Hopefully, you are alert and conscious when it happens. If you are not, who will speak for you?

Photo of an empty hospital hallway.
Make your plan before you end up here. Image from Pixabay.

I am alive today because I have had – still have – those difficult conversations. The people I trust to act on my behalf have followed my wishes. Yes, medical treatments and doctors have played a role in keeping me healthy. But when I was unable to advocate for myself, I had a support network of people who rallied around me to make sure medical professionals viewed me as a complete person.

The orthopedic surgeon who repaired my fracture in January continues to remark on my support team. Each time I see him the conversation is the same, something like:

Where are your sisters and friends? They’re ‘Johnny on the spot’ for you. You’re lucky to have them – they’re great ladies.

I don’t know if he really thought they were great when they were questioning him during my hospital stay. But he’s right – they ARE an amazing team. I am blessed to have them.

Who is on your team?

Do they know you are counting on them?

Have you given them the tools to do their job?

The National Healthcare Decision Day website has links to resources you can use to help start the conversation. Take the time now to put your wishes in writing and share them with your medical team and your loved ones.

Because, as the theme for NHDD 2016 says, It Always Seems Too Early, Until It’s Too Late.

30 Days of Thanks Day 28 – My Sisters (and cookies!)

Today is the annual DiNoto Cookie Bake. This is the day my sisters, parents and I gather together for our tradition of holiday cookie baking. If you are reading this on Saturday, I am most likely covered in flour and sugar. To help explain this day, and why I am thankful for my sisters, I am repeating the post I ran on this day last year. It features an essay I wrote for a memoir class. Susan, Mary Jane, Donna, Sandy and Caroline – I love you more than I can convey adequately with words. Thank you for all you did to make my return trip to Australia a reality. You help me reach for my dreams all the time, and never laugh at my ambitions or ideas. I can’t imagine my life without your love and support. I am able to accomplish all I do because I have you to serve as roll models of courage, determination and perseverance. Today and every day I am thankful to be part of this amazing sisterhood.

The author and her five sisters.
Behind me from left to right: Sandy, Mary Jane, Susan, Donna, and Caroline. Photo courtesy of S. DiNoto.

COOKIES

Families bond in different ways. In my family – we bake. I’m not talking a pie, cakes, or a loaf of bread. My five older sisters and I are part of a tradition of cookie baking.

My Grandma DiNoto, her friends called her Kate, taught us to bake her “Fancy Brown Cookies” by feel. “You don’t need to measure the orange juice. Keep adding juice until it feels like this when you roll it into a ball,” she would say as she cradled the dough in her palm. Noni – also known as Grandma Spadaro or Josephine – made the best Italian Wedding Cookies. When I moved to Albany I heard people refer to them as Ginettes but we always call them oil cookies. My Noni’s oil cookies were never dry and always melted in your mouth, the flavor of anise dancing on your tongue.

I can remember my mother making her Christmas cookie list the weekend after Thanksgiving. It was important to create the list so she would know how much butter, flour, sugar and eggs to buy. My parents had a full length freezer on their back porch and in December, the majority of the freezer was full of cookies. As plates were made and given as gifts, space was created in the freezer and quickly filled with more cookies.

I left home in August 1990 as an exchange student to spend a year in Australia. At Christmas, my mother was missing her “baby” so to cheer her up my sisters Caroline and Donna asked if they could join her to bake cookies. Thus, the tradition of the DiNoto Cookie Bake was born. That first year, nobody could predict what this event would become. For my mother, it was a chance to share family recipes with her daughters. For my sisters, it was a way to practice baking with an expert while helping Mom feel the holiday spirit.

I was home from Australia in 1991 and I joined the group. We continued on for several years until Donna moved to Florida. Caroline and I would still meet at Mom’s house on a Saturday in early December and bake from breakfast until late afternoon. It wasn’t too long before the other sisters decided they wanted to join the party and in 1999 Susan, Mary Jane and Sandy all came for the first time.

Over the years we have expanded. We now bake at my sister Caroline’s house. She has a double convection oven which means 6 trays of cookies can be baking at once! This simple move tripled our output. In fact, when Caroline built her new house in 2009, one of the first questions from the sisters was “Will you still have a double oven?!” That Thanksgiving weekend we christened the new kitchen with flour and sugar while dozens of cookies piled up to cool on the tables in the living room. The emails and instructions detailing who should bring what to Cookie Bake start in early November.

A table loaded with racks of cookies cooling.
Each year, we bake dozens of cookies to share with friends.

As the youngest sister, I am the keeper of the “Cookie Journal.” This journal records secrets and insights, reminders, lessons learned, and stories to be treasured and remembered. There is the reminder from 2005 warning us not to over-fill the pecan tassie pans. The 2008 entry reminds us how we took baking in shifts so we could all run to the hospital to visit Dad who was recovering from hip replacement surgery. The single sentence, “Hi all – love you,”  written by my sister Mary Jane in 2011, one month before she died from brain cancer, makes all of us cry.

The author and her sister Mary Jane. Both are wearing Christmas aprons and Santa hats. Mary Jane is holding a dish of cookies.
Cookie bake with Mary Jane.

The five remaining sisters are individually part of something bigger, like a single measuring cup from a larger set. We still gather for Cookie Bake, but we know the day is not really about the cookies. The day is about us being together, putting the set back in order, starting the holidays with family and love. The set of measuring cups is incomplete now, with one cup always missing. Though you can make a full cup using halves and thirds, it’s not the same.