Thursday, December 15, 2011

Once Upon A TIme

Once upon a time there was a daddy that held his newborn baby on the first day of July and heard the words: Down Syndrome, open heart surgery and heart defect all in the same sentence.  Holding that baby that was barely an hour old the daddy felt sadness and fear like a total eclipse.  His normal sunshine had a shadow.  He could barely breathe.  He couldn't stop holding his baby.  He had to leave his wife and carry his tiny bundle up to some tests. Those tests would reveal the heart defect that was suspected.  As the daddy was watching the tests, all alone and desperate, a song was playing.

That melody, those words and the moment created an indescribable peace and comfort for this daddy.  He held onto that in his hours and days of bad news that followed.  He could feel the blessing he was given.  He knew his son had a rough road ahead but he also knew that the "arms of an angel" would wrap them all up and see them through.

For nine weeks, that baby tried to grow.  At the weekly weigh-ins at the doctor's office, the mommy dreamed of adding little pebbles to the baby's socks so that there would be some weight gained but she knew it would only delay the truth: the heart that was their baby's had only one large chamber and only one valve.  A skilled surgeon would need to build the walls of that baby's heart and create two valves out of one.  The hope was to wait until that baby got bigger but it took way too much energy to eat.  Every meal was like a full workout for that tiny baby.  Normally, it takes about six weeks for a baby's lungs to fully adapt to breathing oxygen.  Once that happened, the lungs tried to do the work of the heart for our baby and he officially went into heart failure. Open heart surgery was no longer sometime in the future.  The time was now, September.

As that daddy held his tiny son, the darkness and fear couldn't help but begin their march toward this daddy's big open heart.  He needed something to get him through this scary part.  He wanted to picture life after open heart surgery.  He tried to imagine the months following.  He couldn't.  All he knew was that within a little while Christmas was coming and his other two children, ages 6 and 4, would be eagerly awaiting Santa's arrival. Would his baby be here for Christmas? Would he survive?  Would he ever know all of the joy that Christmas brings?

Those thoughts swirled around in a sea of fright and hope, a mixture of possibility and worry and landed on one guiding thought.  The daddy announced: "If we get through this and our baby survives we are going to have the biggest, most amazing Christmas decorations and lights to celebrate.  Every year we will add to it and soon we will have the brightest, most dazzling celebration light show around our town."

Miraculously that baby hung on for dear life.  He survived his rib cage being pulled apart, his body being put on a bypass machine so that all of the blood could empty from the heart, his heart being cut open and the "electric field" being broken, the surgeon maneuvering a Dacron patch to create the missing walls and the surgeon somehow using the tissue from one valve to create two.  He withstood a breathing tube, three days without food and two chest tubes to drain the fluids from his body still measured in inches.  He was enveloped by music that brought comfort and hope. And he weathered that invasive attack on his small body with the grace of a baby.  Any one of us would be complaining, reliving the tortuous moments, worrying about recovery and trying to imagine feeling better.  The baby slept and ate and snuggled in and healed remarkably quickly.

Within a few days it was clear that the baby was going to see Christmas.  The daddy got busy.  True to his word he bought some Christmas lights, box after box, bordering on obnoxious and teetering on over the top.  He didn't care.  He bought a jigsaw and started cutting wood.  He created a lollipop forest, a row of candy canes and a gingerbread house.  He let his young children sand and paint and get messy. He was a former master at creating a parade float.  He knew how to set up a large party.  Those skills came in handy for the Christmas light project. 

Each year, the daddy gets out his jigsaw and creates another wooden character.  Twelve years later there is a North Pole sign being held by a penguin, Santa and his sleigh, Mrs. Claus, three snowmen (one in honor of baby Caroline wearing a pink scarf) , a mailbox where you can mail a letter to Santa, and last year's newest addition an angel.

"Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.” 
~Norman Vincent Peale

This year's newest addition -- after much voting and discussion -- was an ice-skater, skating in 
Rock-elf-eller Center. 

Twelve years later that faithful daddy still celebrates the miracle of his baby's health.  He brightens up his neighborhood at Christmas and remembers to acknowledge the light during times of darkness.  

May we each take the time to brighten up our small corner of the world: through our actions, our faith, our generous heart and our mindful moments of optimism even during the darkest hours. Someone once called it: stubborn gladness.  With only a handful of days until we celebrate a real miracle, let's steep in stubborn gladness, reflect joy and be messengers of hope...just like a certain house I know.


  1. How did I never hear the story of the Christmas decorations? Each year I look forward to your house transforming in December and now I know the initial motivation. You and your family are so amazingly strong and so thoughtful to realize the importance of thinking of tomorrows, of joy, of creating something with your children. I'm excited to meet the ice skater and so incredibly happy to give you all a tight squeeze and an especially tight one for Patrick, such an amazing trooper. I love you guys!

  2. So beautiful, Beth...what a loving tribute you have created for Patrick and all children.