Who Are You and What Did You Come Here For?
Three years ago, I held my newborn nephew, Ben, in my arms. I read to him his first book called Welcome To The World. I was overwhelmed with so much emotion that day. I wondered what type of person this little soul would become and how was I going to influence him? I was afraid that I may let him down. Self-doubt and worry crept up on me without warning. However, when I finished the book, I looked down at his soft, long thick blonde hair that stood up on ends and saw his fist wrapped around my finger. I knew then we were here to learn from one another.
Fast-forward to the present, and I watch him playing or I talk to him on the phone, and I am amazed at all the changes in him. He is no longer that wild-haired baby with a red face and chubby cheeks. He is a growing boy with whitish-blond hair, big blue eyes, and a sly smile across his face. This little “kiddo,” as he calls himself, has shown me more about how to live in the moment than anyone I have ever met. He laughs when the feeling overcomes him, sings crazy, made-up songs, and gets excited over gaggles of geese flying overhead. When upset and thinking about all the stresses in life, I am instantly pulled back to the present when he pulls out his harmonica from the toy box -playing and laughing in between songs as my dog howls in unison with him. Everything else melts away and we are together right then and there enjoying each other’s company. Nothing else matters.
A Heart As Big As The Sky.
Ben is never short on smiles, and he is definitely a “people” person. He talks to the refrigerator repairman, says hello to the grumpy guy in the grocery store, blows kisses to the old lady in the checkout line. He talks to kids and adults alike and tells them about his day and asks about theirs. He hugs friends that he just met. He gets and extra whistle-blow from the metro-train operator in St. Louis. He charms waitresses at restaurants -getting extra sides and toys with his meal. He is so charming that people gravitate towards him.
At the circus in July, we passed a clown. Ben smiled and said, “Hi.” The clown stopped what he was doing and gave Ben a sticker and shook his hand. Before long, other clowns gathered around, giving him stickers, and asking if they could have their picture taken with Ben. Other people walked towards us to see what was going on. It’s not that Ben manipulates people, it’s that he knows how to look you directly in the eye, smile, and make you feel special. He radiates love, joy, and kindness. That, I believe, is a gift you are born with, and Ben has it in spades.
The Will Of 50 Strong Men.
Woody and Buzz Lightyear, his heroes from the Toy Story movies, have nothing on this kid. One winter day, when he was about 14 months, Ben was just learning how to walk. He showed a stamina and determination unlike any other child I have known. Once he learned to pull himself up, he walked nonstop. When he fell down, he would crawl or walk back to his original starting place -no matter how far away- and start all over again. He did this hours upon hours, to the point he was grunting and sweating. No matter how much any of us tried to get him to slow down or take a break, he refused to stop until he had mastered the art of walking that day. He enjoyed it as well. He squealed in delight when he reached the ottoman, for example. Then, he would turn back around and walk and waddle down the hallway. There, he would reach the bedroom, touch the bed, squeal in delight, and start the process all over again.
Now that he is older, the focus and determination is set upon solving puzzles, learning flashcards, playing memory games, identifying letters and patterns, and building skyscrapers with his blocks. There is no stopping this kid.
An Epic Journey.
Recently, he was diagnosed with a rare blood disease: congenital amegakaryocytic thrombocytopenia – a disease preventing stem cells from producing enough platelets, which help us clot. He has been in and out of Children’s Hospital in St. Louis, Missouri, for about 2 years now. In January 2011, we learned that in order to treat his disease he needs a bone marrow transplant. Shaken to the core, we cried and wondered, “Why this kid? How will this kid handle the trauma to his body? How do we deal with all of our fears, worries, and ‘what ifs’? Can he survive this? Can we?”
I reflect back over the past 2 years, and realize he has faced countless blood draws, platelet transfusions, bone marrow draws, and 2 surgeries to remove his adenoids and tonsils. On top of that, he has had countless bumps and bruises that has left us on edge wondering if these normal toddler badges of courage will cause him to hemorrhage. Our hearts have been in our throats countless times as well. Through all of this, however, we have come to rely on Ben’s strength -mentally, physically, and emotionally. He is and will be our rock in the days ahead. His spirited attitude towards life has carried us through to this moment and made us grateful for the life in us and in front of us.
I look back at what I have learned from this child: to live life in the moment; to share your gifts with the world; to face life with passion and fierce determination – all valuable lessons when faced with life’s difficult moments. If anyone has a fighting chance to come out of this a stronger and healthier kid, it is Ben. He already has a resilient soul shining from his beautiful, blue eyes like a thousand suns across the universe. Our job is to join our love, support and positive energy with his to help him on this epic journey.
The Will of 50 Strong Men 