Wednesday, January 21, 2009

The other side of the Snowman

The anticipation of today was offset by a snow storm of biblical proportions, by North Carolina standards, 4 inches. Today we are all sitting in our home away from home, the ‘code’ room of the Pediatric Hematology/Oncology clinic at UNC, but yesterday was a different story. School was on a 2 hour delay in anticipation of snow, so there was hope. Hope is a powerful condition, it carries the hint of success, the taste of victory, the whiff of wonderful; and a child and his sister prayed mighty prayers that school would be cancelled. 6 am school was cancelled, 2 inches of thick wet snow mixed with winds gusting to 25 mph had made the roads so hazardous that there were over 150 accidents in our area.

There is something bordering on a sense of high sinful pleasure when one cuddles up in a warm bed, comforter wrapped around you like an oversized Mexican burrito. Waking is a slow pleasure of gentle rising until one faces a window and sees the fluffy white stuff being wind swept into 6 inch drifts. Two possible emotional responses might be reasonably anticipated: 1. Who’s gonna shovel this @#$%#*! 2. Oh! That should be fun to play in. In the Piedmont of NC there is a ‘liaise faire’ attitude about snow it is born of two realities: A. Someday it will snow. B. We have neither the equipment, experience nor inclination to do anything about it. (It’ll all melt away within a day anyway) The other contributing factor to any lack of action was of course the inauguration of the 44th President of the USA.

Having been absent from this type of weather for three years, one might suppose a degree of wonder about the white stuff. What was expressed, gasps of surprise, slack jawed awe, and a real joy at the apparent miracle that God would not only bestow an additional day of rest (from school) but there was gonna be enough of the stuff to have some serious fun.

The wind whipped additional accumulations into place over the remainder of the morning, and in a post inaugural address revelation, the wind died and the sun came out, Wow! In a moment of pure childhood joy Evan ran barefoot into Snoopy’s Magic Food Room (Rather than feeding the hound from the table, we have established that table scraps may only be fed to said mutt in the screened porch off the back of house. As proof of Pavlov’s work, Snoopy stands eagerly in tail wagging fashion by the back door at every meal waiting for access to his Magic Food Room)

The errant run to freedom was met with 2 realizations: Snow is still cold stuff, even in NC; and that Evan is (In Russian accented English) Strong like Bull and Smart like Book! No, not book smart, smart like book! 5 minutes later, dressed with shoes, sweater, hat and shoes, our intrepid cold weather explorer set foot into the frozen tundra of the central highlands of North Carolina. 5 minutes later and dad was shoveling the driveway in NC shoveling attire, and Sissy was modeling the latest skiwear for the NC State Ski Team.

The peals of gleeful laughter echoing from the frozen edifices of the neighborhood only paled in comparison to the ear to ear smiles and rosy cheeks of the children having snowball fights, sledding, and making snow cream. When it only happens in a blue moon, the need to experience it all is overwhelming.
Snow Cream is a NC specialty for snow storms; take a 2:1 ratio of cream to sugar, add 1tsp of vanilla and mix in fresh snow till it develops a solid consistency. The microscopic nature of the snow makes the desert absolutely amazing. Thanks to our NC neighbors who introduced us to this treat. For never getting snow, they sure have the best recipe.

As the day ended, as you can see the sunset was spectacular. And the mariners saying came to mind, “Red sky at night, sailor’s delight; Red sky in the morning, sailor’s warning.”
Today began with the potentially treacherous drive over icy roads to the hospital. We left early and traveling mercies saw us arrive with the perfect time to spare. As pre-medications (changes were made to protect the innocent) were lined up like students in line for lunch we all (Doctor, Nurses, Rec therapist, parents and Evan) waited in almost breathless anticipation of what would happen next. Even when you know its coming, the interactions are difficult to address. The sense of muscle discomfort knows no remedy, no drug can make it go away, no relaxation technique will shed the burden, no tissue is big enough for the tears that fall. Only a drug induced sedation will calm the nerves of all involved. The vivid nightmares in coming nights will be talked through and cried into the shoulders of mom and dad. This we can all deal with, not the leg ‘cramps’ that know no end and have no respite.
As always, your prayers are deemed essential and the warmth of your thoughts a comforting blanket into which we might curl up into while resting by the warmth of a fire stoked in the hearth of our family’s love.

Saturday, January 17, 2009

Pixie Dust, Fairy Magic, and Plastic Blocks

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I would tell you a fairy tale of a boy from a land far away. Once upon a time when he was but a baby his Granny placed a small present in his stocking for Christmas. Inside that colorful paper was a colorful little box, and inside the little box there was a package of small plastic pieces in the brightest reds, yellows, blues and whites. Some graphics oriented instructions and a little effort had seen piece placed on piece and imagination blossomed into both a broad smile and a deep sense of satisfying peace. From that point on that little boy never met a LEGO he didn’t like or want to build, and in the safety of construction he found both a joy of purpose and achievement, but more importantly an escape from the pressures of every day. Pressures no child should be burdened with; pressures no adult would wish upon their mortal enemy; pressures from which there is no respite till a winner is declared. While fighting this battle his only wish, his only focus was to get to the place where he could build, plan and retreat with Legos all day long. That place was Legoland. There are only 4 such places of plastic wonder in the world: Windsor, England; Billund, Denmark; Gunzburg, Germany; and San Diego, CA. But how would he ever get there? Time was tenuous. Physical health was always a potential problem. It was over 3000 miles away; across a continent, past forests, through rivers and deserts, not to mention over snow capped mountains. All this stood in the way. It looked like it may never happen, or worse, that it might happen but only as a hollow victory as the night closed in on our young hero. Someone once said, “Pray as if your life depended on it, and work as if your life depended on it.” So he prayed and he prayed, and his parents prayed and prayed, and his sister prayed and prayed. And he worked on building his LEGOs, and his parents worked on connecting people and ideas together, and his sister worked on annoying him as much as he deserved.
As this is a fairy tale this seems like a good time to put a fairy in the story.
8 months after planting the magic seed, a wish granting fairy called Vanessa from the place called Kid’s Wish Network. 8 months is a long time for a 9 year old. 10% of life has passed you by, surely the wish, the dream, the very idea would have changed. Perhaps it would be to see an episode of Hannah Montana or a trip to Disney or the mountains to ski. Not so when your dream is held so closely to the heart, not so when the very fibers of your being are dragging your eyes toward California at every free moment. And I suppose in a twist on the Fairy tale, Vanessa called on 7 of her magical friends to make this wish change from a dream to a goal by setting a deadline on that dream. And those of you who know will understand when I say that the fairy did the work, but God provided the love and the providence to take that goal and make it a reality. 7 days before the planned wish trip, the little boy was just home from an unplanned 2 day stay in the hospital ICU from a medication reaction, then his blood counts were just on the high side of the border for travel (really low for the average young man – but this boy is nicknamed “RubberBoy” for his resilience and bounce back ability.
And this is how it was done and how those 7 magical friends helped make that little boy the happiest person on earth, if only for a moment. It was a moment that will be lived in and out of every day from that moment on.
The first magical friends were the pilots, attendants, gate personnel and baggage handlers of American Airlines. The finest professionals made everything as easy as possible. A pillow, a blanket, smooth take-offs and landings, the prompt arrival of bags, all this and so much more. I suppose we expect them to do all these things and more each day, but for the boy in the middle of living his dream, every courtesy was afforded. No funny looks at masks or missing hair, just smiles and lots of help. This magical team took him to his dream and escorted him home so that even as sad as he was to leave, they left him smiling and inquiring of his next trip to the land of his dreams.
As American Airlines delivered the boy and his family into San Diego, the torch of support was handed to Hertz as they provided the gleaming Maroon Steed of Travel to the boy’s family. The trusty transport was a minivan big enough to take not only the boy and his bag; but the rest of the family, luggage and he swore he heard his father question the need for an Iron and Kitchen sink, but that could have been the Pacific Ocean lapping against the shore of the harbor wall or was it Mission Bay. For 5 days this valiant mount carried the boy from one end of San Diego County to the other, back again and across the county as well.
As the boy was driven up I-5 towards and into Carlsbad, he came face to face with the place he would call home for 5 nights. The luxurious La Costa Resort and Spa was only exceeded by the grace, courtesy and service provided by the staff (A warm glass of milk and three of the biggest cookies on arrival). It was only here that the boy grew mildly distracted from his quest, he wasn’t sure if it was the early morning dip in the steam shrouded heated pools, or the 3 x 50 inch plasma TV’s or the incredibly comfortable King size bed. His mind was refocused as he became hungry. His hunger was driven by a deep seated drive to accomplish his lifelong dream, and hunger from not eating because he was playing so hard.
Every Fairy Tale should have a twist or two or three. For the little boy the twists came in seeing family and friends while in the area. Time was set aside to meet his mom’s Aunt Myra, Uncle Dave and cousin Dave and his wife, Jocelyn, on the first night. The second night brought a reunion with Nana and Poppa who had travelled from Asheville, NC to San Diego to visit friends in a most serendipitous meeting. Then on the third morning was a breakfast with his “Big” brother’s sister, Sarah. Like a great meal, each meeting enhanced the flavors and experiences of the whole glorious trip. Wow!
It would be easy to suppose that when you live in the land of childhood dreams for any length of time familiarity might breed contempt, or the weather was so unseasonably cold that the staff was frozen, or most likely the staff just paled in comparison to the 41 brightest of bright shiny ABS plastic bricks. None of that mattered. There was a 38 step action plan/agenda to ensure fulfillment of every aspect of the little boy’s dream. As sure as one might be that the Pope is Catholic, one could be reasonably sure that nothing could top the first day in Legoland, but you might be wrong.
After the wish was completed on Day 1, what was left to do? Get some marvelous pizza at a magical friend’s place, and so the little boy, now sated on LEGO for the moment almost fell asleep in his pizza at PRIMO’s in Carlsbad. He was waited on like a king, and the food was delicious for those that remember it. 3 chefs and 3 wait staff kept things moving along, and the boy’s father caught the middle of the BCS National Championship game on the TV in the corner of the room.
Day 2 saw the completion of the agenda, and as things were winding down in Fun Town the little boy had the fires of his imagination stoked and fueled as he went through the LEGO Factory Tour. After this little stroll through manufacturing the little boy settled into Pick-A-Brick. Name a color, they have it. Name a piece, they have it. And since they were selling them by the pound, why not get a pound or two. While this seeking and sorting was going on, a little bird had a little word with a very special friend. Renate, a lifelong LEGO fan and long time employee from Germany, heard that time might be short for the little boy. Renate then exceeded all possible wishes and dreams; she took the little boy back behind the scenes. She showed him how the LEGO’s are made, then she let the little boy make LEGO’s, then sort the bad ones out. Then she helped him make original LEGO statues from real LEGO ABS plastic. She put the real human face, the embodiment of love, excitement and imagination back into the plastic. All of a sudden the dream that had been, became the dream that was reality and laid out a new dream for the future. Happiness and Peace found in connecting cold pieces of colored plastic was now joined with the warmth and huggable Love of a friend who made the dream-into-reality become the reality-into dream, again.
Dinner after the second day at Legoland was hosted by the fifth of his magical friends, the Rockin’ staff of Ruby’s Diner a 50’s themed burger joint. The burgers were huge, the shakes were bigger, and the clown animals and paper boxcars made the evening complete. A evening constitutional through the mall, and a handpicked orange off the trees at LaCosta allowed the day to wind down slowly and for one set of emotions (Joy, glee, WOW!) to be switched for another (Sadness, gloom, despair) as it felt that all reason for living had been sucked out of the little boy as he had no more dreams to seek out.
Seaworld was our 6th magical friend, but even the splash of 8000lb Shamu the Killer Whale could hardly bring a smile to the lips of the exhausted and leg weary young man (little boys have not had to face the fading of their dreams into the sunset of by gone days) But as the sun soaked in, and the Santa Ana winds began to pick up, there was lunch. Breakfast is one thing, but a lunch buffet will really add some energy to your day, especially when you’re eating less than 10 feet from where Shamu and family are also eating. Add in a little feeding of Sea Lions and Dolphins and you have an exciting day. Walking under sharks in a glass tunnel will also provide a certain exhilarating bounce to your step. Just what the doctor ordered to take the edge of a slightly tired and down day before heading back to home.
The young man’s last dinner while on his trip was hosted by his magical friends at Chili’s in San Diego. The food was great, and the service better. It was just the right kind of quiet end to a quiet day after the very emotionally charged three preceding days. If he hadn’t needed to get up at 3:45 the next morning, the party would have gone on for hours.
Dark and early (Bright is not appropriate at 3:45 am) the next morning the young man said good bye to his friends first at La Costa, then dropping his trusty steed at Hertz, and then began the steady journey with his first magical friend become his last as he boarded the American Airlines flight from San Diego back to Raleigh.
He may have left a little boy with his eyes full of wishes and dreams, but he returned fulfilled as a young man. Now his eyes are filled with possibilities and goals; always he looks forward with hope. Now to add to his hope is a taste of dreams come real that will fuel his drive forward, thanks to a good fairy named Vanessa from the land of Kid’s Wish Network.

Tuesday, January 6, 2009

Legoland or Bust!

Like an adult in Polar Express, I am having a difficult time comprehending the attraction of a theme park built around plastic building blocks. Ah! If only the bell would ring again for me. But this isn’t about me, it is all about Evan and his wish. Monday we received the go ahead (Evan’s blood work was okayed) and thanks to Kids Wish Network and their sponsors we will be leaving for San Diego in the morning. We promise to get lots of pictures, and Evan has generated a 38 point agenda for our time in the park.
Your prayers have us floating on a sea of blessings, and the strength and peace you send out are received like water on the parched summer grass of the Piedmont of North Carolina. Without this spiritual sustenance we would be unable to take this trip. Thank you, each of you is a blessing to us from God.