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The Magic of Special Love

October 17, 1996. The day our family heard the words “Ryan has Cancer.” Ryan is my son – born on August 16, 1994. At two years and two months old, his and our family’s lives were forever changed.

Less than one year later, our family was introduced to the Special Love organization (SL), whose mission is to support children and families fighting childhood cancer. My post here shares the blessing of support and magic that the wonderful people of SL have brought to Ryan and our family over the past 25+ years.

Through Ryan’s cancer fights, we have encountered kindness, compassion, and selfless giving that many may never see in a lifetime. Children, siblings, and parents in the childhood cancer fight are often isolated and lonely and have few people in their life to “turn to” to help cope with the tragic experience of the cancer diagnosis, extended treatment of years, and lives turned upside down, that will never return to the “normal,” before cancer, state. Mostly, friends and family members don’t know what to say or do, and they also must carry on with their lives.

In her book, The Focused Fight: A Childhood Cancer Journey: From Mayhem to Miracles, a memoir of Ryan and our family’s experience, Terri references a poem that was provided to us shortly after his 1996 leukemia diagnosis. The poem is titled “Welcome to Holland.”

Welcome To Holland

by Emily Perl Kingsley

Copyright©1987 by Emily Perl Kingsley. 

All rights reserved. 

Reprinted by permission of the author.

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

***

A short time after Ryan’s diagnosis, we met Kathy Russell at Georgetown Hospital, and she was the person to introduce the Special Love organization to our family. We did not know it, but Special Love was a part of the “Holland” that our family had now traveled to in our life’s journey. In September 1997, only 11 months after diagnosis, our family attended a weekend event called “Under 7” for cancer kids under the age of seven and their families. This was the start of a community that became life-enhancing for Ryan and our family.

Tom and Sheila Baker founded Special Love in 1983 after losing their daughter Julia in 1976 to lymphoma. Turning tragedy into good… “Something clicked,” Tom later recalled. “It was as close as I’ve ever felt to a divine calling.” 

Our introduction to the Special Love organization and events throughout the year gave our family a “home” where we could learn from and be supported by others who had traveled or were traveling the road that Ryan and our family were now on. Once Ryan was 7 years old, he attended the signature camp of Special Love, “Camp Fantastic,” Olivia went on to attend “BRASS Camp” for brothers and sisters of siblings fighting cancer. Terri and I met many families who became part of our support network and are now lifelong friends. The children and parents were in an environment where others “understood” the challenges and bonds developed that have endured over the past 25 years and counting.

Ryan attended Camp Fantastic for a record 11 straight years until he aged out at 18 years old. He has gone on to become a camp counselor for what he notes is “the best week of the year.” Olivia attended the BRASS Camp for many years, met her lifelong best friend, Liz, and also served as a counselor. In 2018, I was honored to join the board of directors of Special Love and am now in my sixth year of spreading the good word about the life-changing work this organization does for those fighting childhood cancer.

In April 2019, Ryan presented to a crowd of about 300 supporters at the annual Special Love Gala. I had offered to help Ryan prepare for his speech, but he insisted he did not need my help. The night of the gala, I introduced Ryan and did not know the contents of his speech. Here we were, “winging it [or so I thought – a secret – Ryan had diligently prepared],” and I felt nervous about him to be stepping up to the stage and speaking from the heart. I will never forget my immense pride as Ryan took over the podium after my introduction. He spoke for the next eight minutes or so, sharing the power of what Special Love had done for him and our family. I was emotional and choked up for him – my son had just turned into a young man right before my eyes!

Ryan Tomoff Speaks at the 2019 Special Love Gala

To fully understand the power of Special Love, Erica Nuebert Campbell – Executive Director at Pinky Swear Foundation, Special Love volunteer, and former board member, sums it up beautifully in this quote:

“In a tough situation, few people wake up every morning and say, ‘I’m going to be resilient today.’  Most people under extreme stress wake up with heavy hearts but with a small quiet voice that tells them never to give up. Resilience is listening to that small inner voice and finding people and organizations to help you slowly turn up the volume.”

Our friends at Special Love help connect cancer families, and indeed, over time, the families are able to “turn up the volume” to receive support and to return the support to others in need. When our family arrived in “Holland,” Special Love was there waiting for us.

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Where Are You “Singing Alone?”

December 11, 2022 | Bill, Seth Godin, and Terri Tomoff meetup

“If you’re not prepared to sing alone, it’s difficult to get to the point where people sing along with you.”

Seth Godin’s blog – February 8, 2023

Seth Godin closed this morning’s blog with the above quote. His encouragement for us all to be willing to “sing” alone is a reminder we all need – if we are going to make a contribution and difference in our world.

https://seths.blog/2023/02/the-audacity-of-the-crowd-anthem/

Over the years, my most grateful takeaway from Seth’s work is his emphasis that the ability to “choose yourself” has never been easier thanks to technology. When you choose yourself, you are willing to go forward alone and believe in, or trust, your own vision. Metaphorically, when you choose yourself, you are stepping out and willing to “sing alone.”

Personally and professionally, my life’s joy, contentment, and success have resulted from advantages accrued through a willingness to go alone and stay the course for the long term when my heart believed in what I was doing. The willingness to go forward day after day without seeking affirmation is a compelling strength that I have enjoyed. As the benefits of “singing alone” started to compound, the desire to go down the less traveled path became a fabric of my lifestyle.

When you travel alone in your interests, you eventually discover others who share the same mindset, and your tribe slowly grows. To celebrate the small, caring community of a small tribe, my twin Don and I created the “Virtually No One Community” (thanks to Seth’s blog of January 2, 2023) to celebrate those of us who, in the macro view, stand alone in our work and the value we bring to the world. We all possess unique interests and talents that virtually no one has – unfortunately, too often, we suppress our true selves in the interest of fitting in and being like others. How tragic to live a life seeking to fit in and not allow our individual uniqueness to shine and help others!

A few examples of “singing alone” in my life include:

  1. Dedication to my love of distance running and being a competitive runner for over ten years. Competitive distance running is often a lonely road that requires sacrifices few would be willing to make.
  2. Events of fate will require that we “sing” alone. The fact is that we are required to adapt to external events of which we have no choice. Two notable moments of fate in my life include being born as a twin (brother Don – which has been a blessing that is impossible to convey) and the 1996 diagnosis of my two-year-old son, Ryan, with childhood cancer (ALL – Acute Lymphoblastic Leukemia) that thrust our family’s life into inexplicable chaos from that day forward. See the memoir by my wife, Terri, titled The Focused Fight: A Childhood Cancer Journey: From Mayhem to Miracles.
  3. Professionally, twin Don and I developed and challenged our thinking non-stop throughout our careers in accounting and business. Through our early adopter mindset around technology, we have repeatedly gained a disproportionate advantage allowing us to make exceptional contributions and help others in our careers.
  4. My perspective of an abundance mindset, dedication to personal development, kindness, and gratitude, has enabled me to continually grow and lift my spirits and the spirits of others.
  5. In March 2018, I co-founded #TwinzTalk with Don to share tips for encouragement and personal development via social media. “Changing the world, one interaction, one person, at a time.”
  6. In June 2020, Terri and I joined the Akimbo Writing In Community (WIC) initiative. I now consider myself a writer, and my daily process of showing up to write is a gift I treasure.

Where are you singing alone?

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The “Virtually No One” Community – Join the Initiative!

Inspired by Seth Godin’s blog posted on January 2, 2023, my twin Don and I are starting the “Virtually No One” community. This community is for people who personally and professionally take “the road less traveled” and, in the long run, are making a compelling difference for themselves and their world.

Virtually no one is enough. Our lives and this community are committed to believing that a small act, thinking differently, and using our talents to solve problems, one individual does make a difference. We trust this to the core as we have seen proof throughout our lives and careers that our early adopter mindset, combined with a vision of potential, has exponentially rewarded, over and over. We know our beliefs and actions are “changing the world, one interaction, one person, at a time.”

Seth’s blog notes:

“Compared to the overall population, virtually no one built Wikipedia, virtually no one voted for that senator and virtually no one starts a business. Virtually no one cares enough to help a stranger in need, and virtually no one leads the way.

And that’s okay.

Because virtually no one is enough.

“When we “see” the potential of thinking and working differently, the space is lonely and only persistence, and long-term dedication provides hope for progress (for example – consider the Slack collaboration tool introduced in 2016 – highly resisted in its early days, but now ubiquitous along with Microsoft Teams, in today’s world). The payoffs when the idea succeeds are very gratifying. To be clear, failures frequently occur, causing many to say, “I knew that wouldn’t work.” Because of the fact that failures do occur, and many folks will not move ahead (late adopters) without convincing definitive proof of success, virtually no one is willing to walk the path.

A few quotes of inspiration:

“Don’t worry about people stealing your ideas. If your ideas are any good, you’ll have to ram them down people’s throats.” –Howard Aiken

Steve Jobs “Crazy Ones” Quote:

“Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes… The ones who see things differently – they’re not fond of rules. You can quote them, disagree with them, glorify or vilify them, but the one thing you can’t do is ignore them, because they change things… Because the ones who are crazy enough to think they can change the world, are the ones who do. Think different.”

In all our actions, we think of helping others and helping the communities in which we live and work. Commit to personal development/self-improvement and lean on your talents to help others. Do what is right in your heart, and do not strive to “fit in” with the masses. To fit in is doing our genuine selves a disservice. We all are meant to and have so much potential to significantly contribute to the world with our unique talents.

A few examples of virtually no one community members:

  1. Don made a trip to Costco Wholesale recently and noted many stray carts in the parking lot. Case in point, virtually no one (other than an employee of Costco) will take the time to collect and return several carts to the appropriate stations and out of the vehicle’s harm’s way.
  2. How about picking up trash in our communities? Again, welcome to the virtually no one community!
  3. My wife Terri published a memoir of our son Ryan’s 5x cancer battles (The Focused Fight). Well, virtually no one writes a book.

Let’s get active and dedicate our talents and energy to making a positive contribution – in ways and areas where virtually no one, unfortunately, is paying attention. Join us, shine the light, and share your stories!

December 31, 2022 – Don Tomoff at Costco Warehouse – shopping carts assistance
July 24, 2021 – Ryan and Terri Tomoff at The Focused Fight Book Launch
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Special Love – Childhood Cancer Support Charity

Share what inspires you and provides purpose in your life… #TwinzTalk#SpeciaLove

One of my most significant opportunities and joys is serving on the board of directors for Special Love, Inc. – an organization that helps children and families fighting #ChildhoodCancer. My relationship with the organization’s mission is very personal; my son Ryan and our family have been on the receiving side of their services since 1997.

Please check out this 36-minute No Politics #Podcast for a great discussion with Executive Director Jan Bresch. She explains so well the various programs of support that make an incredible difference for families. Looking for a well-organized and highly rated #charity to support? Look no further.

In the podcast, a portion focuses on the thoughts of a previous camper and now counselor, Julia Jones. The link to the complete reflection is in the comments – Julia does a magnificent job articulating the bonds and magic that Special Love camps create.

Here is a brief excerpt from Julia’s blog thoughts:

“𝘔𝘢𝘯𝘺 𝘱𝘦𝘰𝘱𝘭𝘦 𝘭𝘪𝘷𝘦 𝘵𝘩𝘦𝘪𝘳 𝘭𝘪𝘷𝘦𝘴 𝘴𝘦𝘦𝘪𝘯𝘨 𝘥𝘢𝘳𝘬𝘯𝘦𝘴𝘴 𝘦𝘷𝘦𝘳𝘺𝘸𝘩𝘦𝘳𝘦 𝘵𝘩𝘦𝘺 𝘨𝘰 𝘦𝘷𝘦𝘯 𝘵𝘩𝘰𝘶𝘨𝘩 𝘵𝘩𝘦𝘺 𝘭𝘪𝘷𝘦 𝘪𝘯 𝘵𝘩𝘦 𝘭𝘪𝘨𝘩𝘵. 𝘉𝘶𝘵 𝘐 𝘩𝘢𝘷𝘦 𝘮𝘦𝘵 𝘤𝘩𝘪𝘭𝘥𝘳𝘦𝘯 𝘸𝘩𝘰 𝘩𝘢𝘥 𝘥𝘢𝘳𝘬𝘯𝘦𝘴𝘴 𝘱𝘶𝘴𝘩𝘦𝘥 𝘶𝘱𝘰𝘯 𝘵𝘩𝘦𝘮 𝘢𝘯𝘥 𝘧𝘳𝘰𝘮 𝘵𝘩𝘢𝘵 𝘱𝘭𝘢𝘤𝘦 𝘴𝘵𝘶𝘣𝘣𝘰𝘳𝘯𝘭𝘺 𝘪𝘯𝘴𝘪𝘴𝘵 𝘰𝘯 𝘴𝘦𝘦𝘪𝘯𝘨 𝘵𝘩𝘦 𝘭𝘪𝘨𝘩𝘵.

𝘐𝘯 𝘵𝘩𝘦 𝘦𝘯𝘥, 𝘐 𝘥𝘦𝘴𝘤𝘳𝘪𝘣𝘦 𝘤𝘢𝘮𝘱 𝘢𝘴 𝘵𝘳𝘢𝘯𝘴𝘤𝘦𝘯𝘥𝘦𝘯𝘵 𝘢𝘯𝘥 𝘣𝘪𝘵𝘵𝘦𝘳𝘴𝘸𝘦𝘦𝘵. 𝘐𝘵’𝘴 𝘢 𝘸𝘦𝘦𝘬 𝘰𝘧 𝘵𝘩𝘦 𝘮𝘰𝘴𝘵 𝘧𝘶𝘯 𝘺𝘰𝘶 𝘤𝘢𝘯 𝘩𝘢𝘷𝘦: 𝘳𝘪𝘥𝘪𝘯𝘨 𝘩𝘰𝘳𝘴𝘦𝘴, 𝘤𝘢𝘯𝘰𝘦𝘪𝘯𝘨, 𝘱𝘭𝘢𝘺𝘪𝘯𝘨 𝘥𝘳𝘦𝘴𝘴 𝘶𝘱, 𝘣𝘶𝘪𝘭𝘥𝘪𝘯𝘨 𝘢 𝘴𝘱𝘢𝘤𝘦𝘴𝘩𝘪𝘱, 𝘷𝘪𝘴𝘪𝘵𝘪𝘯𝘨 𝘢 𝘧𝘢𝘳𝘮, 𝘳𝘪𝘥𝘪𝘯𝘨 𝘢 𝘮𝘰𝘵𝘰𝘳𝘤𝘺𝘤𝘭𝘦, 𝘸𝘪𝘯𝘯𝘪𝘯𝘨 𝘮𝘰𝘳𝘦 𝘱𝘳𝘪𝘻𝘦𝘴 𝘢𝘯𝘥 𝘴𝘵𝘶𝘧𝘧𝘦𝘥 𝘢𝘯𝘪𝘮𝘢𝘭𝘴 𝘵𝘩𝘢𝘯 𝘺𝘰𝘶 𝘤𝘢𝘯 𝘦𝘷𝘦𝘳 𝘧𝘪𝘵 𝘪𝘯𝘵𝘰 𝘢 𝘴𝘶𝘪𝘵𝘤𝘢𝘴𝘦, 𝘴𝘪𝘵𝘵𝘪𝘯𝘨 𝘢𝘳𝘰𝘶𝘯𝘥 𝘢 𝘤𝘢𝘮𝘱𝘧𝘪𝘳𝘦, 𝘸𝘪𝘵𝘯𝘦𝘴𝘴𝘪𝘯𝘨 𝘮𝘰𝘳𝘦 𝘤𝘰𝘮𝘱𝘭𝘦𝘵𝘦 𝘢𝘯𝘥 𝘶𝘵𝘵𝘦𝘳 𝘴𝘪𝘭𝘭𝘪𝘯𝘦𝘴𝘴 𝘵𝘩𝘢𝘯 𝘰𝘯𝘦 𝘱𝘦𝘳𝘴𝘰𝘯 𝘤𝘢𝘯 𝘩𝘢𝘯𝘥𝘭𝘦, 𝘢𝘯𝘥 𝘮𝘢𝘬𝘪𝘯𝘨 𝘵𝘩𝘦 𝘬𝘪𝘯𝘥 𝘰𝘧 𝘧𝘳𝘪𝘦𝘯𝘥𝘴 𝘺𝘰𝘶 𝘸𝘪𝘭𝘭 𝘯𝘦𝘷𝘦𝘳 𝘧𝘰𝘳𝘨𝘦𝘵. 𝘊𝘢𝘮𝘱 𝘪𝘴 𝘧𝘶𝘭𝘭 𝘰𝘧 𝘵𝘩𝘦 𝘬𝘪𝘯𝘥 𝘰𝘧 𝘱𝘦𝘰𝘱𝘭𝘦 𝘸𝘩𝘰 𝘸𝘪𝘭𝘭 𝘥𝘰 𝘸𝘩𝘢𝘵𝘦𝘷𝘦𝘳 𝘪𝘵 𝘵𝘢𝘬𝘦𝘴 𝘵𝘰 𝘮𝘢𝘬𝘦 𝘢 𝘤𝘢𝘮𝘱𝘦𝘳 𝘴𝘮𝘪𝘭𝘦….

𝘈𝘵 𝘵𝘩𝘦 𝘣𝘦𝘨𝘪𝘯𝘯𝘪𝘯𝘨 𝘰𝘧 𝘵𝘩𝘦 𝘸𝘦𝘦𝘬, 𝘣𝘦𝘧𝘰𝘳𝘦 𝘵𝘩𝘦 𝘤𝘢𝘮𝘱𝘦𝘳𝘴 𝘢𝘳𝘳𝘪𝘷𝘦𝘥, 𝘛𝘰𝘮 𝘉𝘢𝘬𝘦𝘳, 𝘚𝘱𝘦𝘤𝘪𝘢𝘭 𝘓𝘰𝘷𝘦’𝘴 𝘧𝘰𝘶𝘯𝘥𝘦𝘳, 𝘨𝘢𝘷𝘦 𝘶𝘴 𝘴𝘰𝘮𝘦 𝘢𝘥𝘷𝘪𝘤𝘦: 𝘍𝘢𝘭𝘭 𝘪𝘯 𝘭𝘰𝘷𝘦 𝘸𝘪𝘵𝘩 𝘢 𝘤𝘢𝘮𝘱𝘦𝘳. 𝘐𝘵’𝘴 𝘯𝘰𝘵 𝘩𝘢𝘳𝘥 𝘵𝘰 𝘭𝘰𝘷𝘦 𝘵𝘩𝘦𝘴𝘦 𝘬𝘪𝘥𝘴. 𝘛𝘩𝘦𝘺 𝘤𝘭𝘪𝘮𝘣 𝘳𝘪𝘨𝘩𝘵 𝘪𝘯𝘵𝘰 𝘺𝘰𝘶𝘳 𝘩𝘦𝘢𝘳𝘵 𝘢𝘯𝘥 𝘴𝘵𝘢𝘺 𝘵𝘩𝘦𝘳𝘦.”

Listen to the Music in My Heart