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?

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.

30 Days of Thanks Day 4 – Guest Post by Shari Howerton

Today marks the first of several guest posts for this year’s 30 Days of Thanks. I ‘met’ Shari Howerton in an online writing group at the end of 2014. I was new to sharing my writing, and hesitant to be vulnerable. Shari inspired me with her courageous writing, and became an encouraging presence as I gradually started to explore difficult topics related to my history with disability. Shari’s blog, “Miss Oblivious Thinks Out Loud,” is a collection of stories and experiences many people choose not to talk about. As Shari explains, “I share thoughts and struggles many people would keep to themselves. But I love nothing more than being able to make someone else feel less alone. And I love to inspire hope and gratitude in others by sharing mine.”

Thank you Shari, for pushing me to be more open and for being an example of bravery and strength. I hope my readers will go explore more of your writing after reading your guest post!

Thanking My Former Sister-In-Law

When I was asked to write a guest post thanking someone who has made a difference in my life, my first thought was, “How will I ever choose one person?” I have so many friends who have been important in my life. They have all made a difference.

My next thought was, “Who has made a difference in my life that only they could have made?” And there was one person who came instantly to my mind. My former sister-in-law.

We were married to brothers for 27 years. During those years, there were times when our husbands had issues with one another and times they weren’t even speaking to each other. But she and I always got along.

When my marriage ended in divorce, I was sad to also be divorced from a family I had loved for decades. I still wanted my sister-in-law in my life. And I would have loved to continue being an aunt to my nephews by marriage. I only wanted to divorce the man who abused me. But my ex was an extremely divisive person who drew lines and expected loyalty. I knew there would be unspoken pressure on my sister-in-law to withdraw from me. My ex actually had the audacity to text me after I was remarried, ordering me not to communicate with any of his family.

But when my ex-husband passed away suddenly in 2011, the only obstacle standing in the way of our continued friendship was removed. And we resumed contact.

In 2012 I began exploring the possibility of writing my second book. My former sister-in-law told me she had seen me post on Facebook about it. I wasn’t sure at that point if my cathartic writing would culminate in a finished book, let alone a published book. But the memories were flowing. I trusted her and offered to share my first two chapters in their rough draft form.

When you write about painful truths, as I have in both my books, you make yourself vulnerable to criticism. You have to endure being attacked by people who don’t want the truth to be told or (as Jack Nicholson once said) can’t handle the truth. People label you in ways you don’t deserve. And you anticipate being called a liar by someone.

For anyone who highly values truth, as I do, there is nothing harder than accepting the reality that someone who should know you better actually believes you would even consider writing lies in a book.

I didn’t know with certainty if she would believe how badly I had been treated during those 27 years. But I knew she was a trustworthy person. And I believed she genuinely cared about me. So I decided to risk sharing my writing with her, chapter by chapter, as I recounted memories going back to before we had met. I reasoned that even if I was not fully believed, at least I would have had the opportunity to be heard. And being heard is a big deal to any victim.

After reading the first two chapters, my sister-in-law responded with such compassion. She wanted me to know that they (my in-laws) had no idea I was being treated so badly. They had only heard the skewed versions of our life that he had told them. It did seem odd when he would show up unexpectedly without me. He would often leave as abruptly as he had come. And they knew he had a dark side. But what I was sharing with her was beyond anything she could have imagined. It was important to her that I knew she was not treated abusively by her husband. And she told me she was sorry for buying into the lies she was told. Not her fault, in my opinion. We lived hours away from each other. She couldn’t have known how abusive he was based solely on his difficult personality. But she remembered also being the butt of his stinging jokes and sarcasm at times, and how uncomfortable she was. She dealt with it much the same way I did; by taking it in stride. The only difference was that she saw him occasionally and I lived with him daily.

I couldn’t have confided in her back then for obvious reasons. And I was careful what I shared with my own family for a whole different set of concerns. Avoiding undesirable repercussions was a continual focus for me.

However, a whole new bond was formed between us (for me anyway) through my sharing and her empathetic responses. Her confidence in my honesty and encouragement to keep writing meant more to me than she could have imagined. But I think it even meant more to me than I could have anticipated. Sharing my deeply personal journey and receiving the kind of feedback she consistently offered was both healing and empowering as a woman and a survivor of abuse.

The need for affirmation is strong in someone who has endured many years of emotional and verbal abuse. One of the most painful aspects of my abuse was having my character, my heart, and my motives continually questioned and/or crucified. Malicious and hateful intentions were assigned to me in every instance of conflict. So I became a person who felt the need to chronically explain myself in the hope of being understood.

Years of this abuse results in scars that may fade over time, but are always faintly there. Those scars are partly why I tend to over-explain myself to this day.

After reading each installment (which she acknowledged as quite painful for her to read), she would consistently close with this sentence: “Keep on writing!” She assured me I was going to help someone, which was the primary goal of my writing. I was so comforted and reassured that she knew I wouldn’t make up lies.

S., for your love and friendship, your compassion, your support and encouragement, I just want to say thank you from the bottom of my heart. Even though we are separated by many miles today and mostly communicate through email, I feel closer to you than during all the years I was still an official member of your family.

You could have walked away and shown no interest in me or my struggles. I’m sure it would have been easier. But you cared enough to want to know my heart and my pain. To do that, you had to be willing to open your heart and to feel pain that wasn’t your own.

Many people choose to look away from the suffering of others rather than to take it in and be immersed in it – even through reading a book. Many people don’t want to be burdened or stressed beyond their own problems.

You are not one of those people. And I’m grateful to have you in my life.

 

A Caucasian woman with short brown hair holds two books. The book in her left hand is titled, "Through My Eyes." The book in her right hand is titled, 'Breaking the Chains."
My guest for today, featuring her books at a book signing.

To learn more about Shari’s books, visit her page on Amazon or her website.

Happy Father’s Day Sam!

Once again, it is Father’s Day in the United States and some other countries. I suspect I will see many posts honoring fathers on social media today. I originally wrote this post in honor of my father, Sebastian or “Sam” as he is known to everyone, as part of my 30 Days of Thanks posts. It has been a stressful week, so I am taking the easy way out and sharing it again as most of my readers were not here for the original 30 Days series.

Happy Father’s Day to all the fathers out there, and to all who serve as father figures to others. My thoughts and prayers are with my friends and family who are facing their first Father’s Day without their father.

Thirty Days of Thanks – Sam

When I decided to do the 30 Days of Thanks challenge, I knew my mother and father would have to be mentioned. I decided to write about them separately because they each deserve their own day in this month of gratitude. People who have good relationships with their parents often credit them for shaping their own success. I never appreciated just how amazing my own parents were until I left home and realized others were not blessed with the same family love and acceptance I have known.

My father, Sam as he is known to everyone, is one of the most influential people in my life. He is outgoing, friendly, and quick with a story if given an audience. He was the manager of the grocery store in my little hometown, Bainbridge, for more than 30 years. As such, he was the first employer of many – myself included. It seems almost everyone in town knows Sam. To this day, when we go out in town together someone always says, “Hi Sam!” He will have conversations with them all even if he is in a rush.

My brother-in-law’s family used to hold an annual bluegrass festival. For several years, my father ran the concession stand. My friends and I were eager to earn money so we would spend the weekend at the festival serving hot dogs and hamburgers. We were the recipients of his pearls of wisdom as he flipped burgers and sang along to the music. Several of those sentences continue to guide me today.

“The customer is always right – even when they’re wrong.”

“I don’t care if you have a calculator or a cash register – you have to be able to count money and make change in your head.”

“People are more likely to do what needs to be done if you tell them why.”

“It doesn’t matter what job you do or what you learn in school. The most important skill you can possess is the ability to get along with people. If you can do that, you can do anything.”

If I am faced with a problem or dilemma, I ask myself what Dad would do. Unfortunately when I talk to him about things he often says, “I can’t tell you what to do – you have to figure that out on your own.” But the conversation often helps me uncover new ideas or angles I may not have considered. He usually has a story to tell about the matter at hand.

Dad is generous with his time and talents. I learned the importance of becoming engaged in my community by watching him. Bainbridge is home to an annual canoe regatta and for many years he coordinated and managed the chicken barbecue. Dad volunteered for the church, the Knights of Columbus, the Chamber of Commerce, and the Rotary Club. In his 70’s he began helping serve “the old folks” at the senior meals; many were younger than him. A few years ago when he was hospitalized I learned he had adopted a child in South America through a church charity and wanted to make sure I would continue to support him if “something happens to me.” He purchased a subscription to the New York State Conservationist  magazine for my niece when she moved to North Carolina for a teaching job so she could help her students understand New York was more than New York City.

Photo of the author, a woman in a wheelchair, and her father in front of a large pine tree.
Dad and I in front of “our tree.”

My parents were older when I came into the family. Dad claims I was planned but I’m not sure my mother was planning for daughter number six. Last year my parents celebrated their 60th wedding anniversary. Dad and I posed for a photo in front of “our tree” – the pine we planted together when I was five. As we stood there, he leaned over my shoulder and said, “I’m so glad we had you.” I choked up when I turned to kiss his cheek, grateful for the man who for so many years has served as my moral compass and a source of love. His belief in me – in all of us – and his admiration are gifts beyond measure. I honor him by doing my best in the hope I continue to make him proud.

30 Days of Thanks Day 25 – Jamie

Growing up, my family spent many Sunday afternoons and holidays visiting my Noni, or grandma. I am the second youngest of my Noni’s twenty-four grandchildren and consider myself fortunate to have close relationships with many of my cousins. My cousin Jamie was a constant playmate during childhood whenever we gathered as a family.

Jamie is my cousin Amy’s daughter, and not my first cousin, but that distinction never really mattered. In our large family, “cousin” is a blanket term for anyone who might be related as an actual cousin, spouse of a cousin, or child of a cousin.

My Noni lived in a yellow stucco house on Clinton Street. Whenever we visited,  the house was full of laughter and love – and usually some cookies or good treats. My grandfather built a reflecting pool in the backyard. In the summer, Jamie and I would play in and around the pool. I remember playing hide and seek with her, taking care not to trample Noni’s tomato plants in the garden while trying to get out of sight. Over time, we thought we were too mature for hide and seek and spent time talking about boys and pop music instead.

Jamie and her parents, my cousins Amy and her husband Jim, lived about an hour away from the summer camp I attended. When I was eleven or twelve, we spent the night at their house before my parents dropped me off at camp. Jim is a veterinarian and gave us a tour of his practice. I remember Jamie being amazed when I said we did not have a pet at our house.

I am proud of my cousin Jamie. She is an accomplished professional living in the New York City area. Now that we are adults, Jamie and I communicate mainly on social media. I learn from the articles she shares about business and leadership, and have been able to implement some new practices into how I manage my home care staff thanks to the information I find on her page. Jamie is still an animal lover and photos of her dog, Shea, often make me smile. I am still not a pet person, but she has one adorable Golden Retriever! Jamie is also a fantastic and fun aunt to her nieces and nephews.

Last year when I was planning my trip, Jamie sent me a brief note with her gift of support. “Love you!” Cousins can get away with short messages which convey deep thoughts. Stunned by her generosity, I quickly wrote her a thank you note to express my gratitude. She wrote me back, another short message.

Now the rest of the world will know why we are so inspired by you!

As I did with all of my 30 Days profiles, I reached out to Jamie to get her permission to share the story of our relationship on my blog. Once again, she responded quickly and enthusiastically.

I would be honored to be part of your blog, my love. Just honored!!!! I think about you all the time and have really enjoyed being inspired by YOU!!!!

Jamie – thank you for believing in my ability to help others, and for helping to make my trip a reality. The truth is, you inspire me all the time with your creativity, your concern for others, and your charity. I appreciate you reading my blog regularly, and leaving insightful comments. You have supported my endeavors with your kind words and consistent feedback. The next time I am in New York City for an event, I think we need to plan to meet for some girl talk. We are WAY overdue!Photo of a woman standing on the balcony of a hotel with a sunset sky behind her.

30 Days of Thanks Day 14 – The Wells’ Family

I started writing this post weeks before I learned of yesterday’s attacks in Paris and Beirut. My heart aches for the victims and their families. I am writing this month of posts because when I was sixteen, I had the chance to participate in an international youth exchange. This exchange, sponsored by Rotary International, taught me the importance of cross-cultural and international understanding. Now, more than ever, we need more of this international dialogue. I am sticking with my intended post because today, while a day of mourning for many, is also a day of celebration for those I love. Congratulations Simon and Emma – may you have years of happiness together.

When I was preparing to be an exchange student, one of my main concerns was related to the families which would host me. I did not need to worry. I was fortunate to be placed with four wonderful families. I developed close bonds with all of them and have stayed in touch over the years

My first email after accepting the invitation to return to Australia was to Malcolm and Rae. They were my fourth host parents, the final family to host me at the end of my year. Would they be willing to help me find accommodation once again? The reply came quickly.Photo of the author, a woman in a red wheelchair, with an older couple standing behind her. All three are dressed in business attire. They are in front of cloth drapes featuring Rotary Club banners.

We are doing some renovations and think you’ll be able to stay here. Would you be comfortable with that?

Would I be comfortable with that?! Of course I jumped at the chance to spend time with “family.” Who wants to stay in a hotel when you can stay at a place you once called home for a brief time?

Many of my memories from the time I spent living in the home on Bonnet Hill involve boys and golf. Malcolm and Rae have two sons, Martyn and Simon. This meant I was an “older sister” AND I had  younger “brothers” for the first time in my life. Martyn and Simon were curious about America, picking on my accent and the words I used. Along with Martyn’s friend David, they would try to pronounce “New York” as I did, then would tell me to say “alum-in-um” instead of “alu-min-i-um,” which usually resulted in all of us giggling. The boys took to calling me “DiNoto,” putting extra emphasis on the second syllable as I often did when I corrected people who said “Di-NAH-to” rather than “Di-NO-to.”

One morning I came out of my bedroom and almost stepped on a golf ball which was rolling down the hallway. I stared quizzically at Simon, standing at the other end of the hall with a putter in his hands, who proceeded to explain how the boys had created a putting course throughout the house and the lawn. Would I mind announcing myself prior to coming out of my room from now on so he would know not to putt? I probably rolled my eyes and told him to get out of the way so I could go to the bathroom. In addition to watching for golf balls rolling down the hall, the new course also meant I had to sit at a different spot at the dining room table to write in my journal so my chair did not obstruct the path of the green. I tolerated the golf until one morning in April. My bedroom door flew open at 6:30 AM on a Saturday as Simon and Martyn both came running in. “Denise – get up! The U.S. Open is on TV!” 

I rolled over, assuring them both I did not have the slightest interest in anything on TV, reminding them it was Saturday and we did not need to be up this early. “But, it’s live from America! Don’t you want to see it?” I yawned, and agreed to get up in an hour if they didn’t make me watch golf. I don’t remember if I actually did watch golf with Martyn and Simon that morning, but I do remember Simon’s insistence that I should care about it since, like me, the broadcast was from the United States.

Malcolm, Rae, Martyn and Simon welcomed their home and hearts to me twenty five years ago, and I remain grateful to be an adopted member of their family. We have stayed in contact since my exchange year. In 2010, I served as tour guide when Malcolm and Rae came to the United States as part of a trip around the world. They stayed with my sister Sandy, also a Rotarian like Malcolm and me, and each day we explored the many areas I call home. I brought them to Bainbridge, my hometown, to meet my parents. My mother especially wanted to be able to thank Rae for taking care of “her baby.”

Without Malcolm and Rae, my trip in March would not have been the wonderful experience Kelly and I were able to enjoy. Every time I had a problem or question before I even arrived, Malcolm and Rae had answers. Malcolm found the Invacare wheelchair charger I used during my stay, sparing me from frying the electronics in my power chair. Rae had extra chargers we were able to use for our electronic devices, which was wonderful since I’d forgotten my adapter. Malcolm coordinated the accessible van rental, a gift from Kingston Rotary, which enabled us to move freely around the state for two weeks. Malcolm and Rae hosted a barbecue in their home, and allowed visitors to pop over for coffee, chats and meals throughout my stay. They both took amazing photos, which they shared with me and gave me permission to use on my blog.

One of the highlights of my visit this year was our family dinner. The family has grown in twenty five years. Martyn is now married to Sonia and they have two adorable children. At the time of our visit, Simon and Emma were engaged. Today is their wedding and I know you will join me in wishing them years of love and happiness together.

As we sat around the table in March, laughing and telling stories, I was reminded of something I often say when I speak about my exchange year. Home is not just the place where you were raised. Home is wherever you find love, support and a base from which to thrive.

Malcolm, Rae, Martyn and Simon – thank you for making your home a place where I could find love and acceptance. I am blessed to have “family” willing to adapt to my needs and accept me for who I am. I appreciate your assistance in making my dream visit a reality. Malcolm and Rae, I am honored you were present at the conference to hear me publicly thank the men and women who made such a difference in my life. The two of you have changed my world in so many ways and I will always be grateful for the love and friendship you have given willingly for the past twenty five years. Martyn and Simon – you were the best introduction to younger brothers any girl could ask for. You have brought your parents joy and I know they are proud of you (as am I) and all you have become. I am with you today in spirit as you gather in celebration. “DiNoto” sends her love!

Multi-generational family photo of grandparents holding grandchildren, and adult children. One of the adult sons holds a dog.

Race for Hope 2015

A group of people wearing yellow shirts gathered in front of the finish line of a race. The shirts say "Team MJ." Team MJ gathered once again yesterday for the 2015 Race for Hope. The 5K is a fundraiser for the Capital Region Special Surgery. This medical group, based near Albany, NY, organized the Race for Hope Fund to raise money to support programs and services for patients who are in treatment for brain, head and neck cancer. Last year I wrote about my family’s involvement with this race and why we choose to support this worthy cause.

My niece Karen created Team MJ in honor of her mother, my sister Mary Jane, who was diagnosed with glioblastoma, an aggressive brain cancer. Karen first ran the Race for Hope, along with her brother and brother-in-law, in 2011. Mary Jane and her husband, Zip, cheered from the sidelines. Sadly, it was the only time Mary Jane and Zip would see their family run the race as they both passed away from their respective terminal cancer diagnoses prior to the 2012 Race for Hope.

Yesterday was a beautiful autumn day in upstate New York. The sunshine chased the chill from the morning air and the mood was festive as race participants gathered. Team MJ’s bright yellow shirts made our team stand out in the crowd. The team shirts feature music notes in honor of Mary Jane’s talent and love of music, as well as the ribbons for brain cancer and melanoma in memory of Mary Jane and Zip. Once again, the oldest race participant was a member of Team MJ. Grandpa H finished the 5K in just over one hour and 20 minutes. Not bad for a man who will be 90 in December! Team MJ also won the medal for best team colors thanks to those bright yellow shirts.

Team MJ is not the only team to participate in Race for Hope in memory of someone. Susan’s Busy Bees and Linda’s No Taste Bakers were there as well. Every year, part of me wants to go up to them and the other teams and give them hugs of support. We all know what is it like to be racing in memory of a loved one taken from us too soon.

Everyone wearing a team shirt has been touched by loss. Yet, we all find a way to keep running year after year, mile after mile.

Isn’t that what the real race called life is about?

We all face obstacles and unexpected loss. When these events occur, we can choose how to respond. We can become mired in grief or sadness, bemoaning our misfortune. Or we can find a new normal, a way to continue to engage with the world around us while recognizing things have changed.

Mary Jane and Zip wanted us to continue to live. They wanted us to keep racing, to keep gathering in support of one another.

The advantage of being honorary ‘team finish line photographer’ is I can sit and have a cry by myself while the team is out on the course. I cry because I miss my sister and brother-in-law, even though I know their spirit remains among us. I cry because I am sad they are not present in person to share in the joy and laughter created by their grandchildren. I also cry because I am incredibly proud of my nieces and nephews, and their husbands and wives. These young adults continue Mary Jane and Zip’s legacy of charity and love towards others, as their parents would have wanted.

And so we race. We cheer for participants of all ages and abilities – those who run their hearts out and those who walk the course. We offer congratulations for their accomplishments and encouragement when they need a boost. We celebrate the milestones and mourn for those who are no longer with us in person.

In doing so, we are all winners – just like Team MJ.