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!
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.