Sometimes the journey is more important than the destination.  It matters more who you meet and who you touch than where you go.  That can certainly be said for the journey that childhood represents.  Markel started his courageous journey very early in life.  By a mistake of nature, a twist to the right instead of to the left when his organs were being formed early in his prenatal life caused severe abnormalities of his heart and intestines.  Because of these problems, he was very tiny and sick when he was born and spent months in the ICU, much of that time on a ventilator.  The wiring in his heart was in disarray and he needed a pacemaker to keep it beating properly.  He had his first major heart surgery at one month of age to help get more blood flow to his lungs.   He spent a week after that on a bypass machine and still required a second such procedure to keep him alive.  Surgery on his GI tract left him dependent on mechanical feedings and exacerbated his precarious nutritional status. 

At four months of age, weary from the marathon he had been running to that point, he came to Ranken Jordan to take a breather.  The goal was to see if his malformed heart and scarred lungs could heal enough to allow him to undergo a more definitive fix.  It would mean almost daily tiny adjustments in one or more of his dozen or so medications and frequent changes in his oxygen levels, his fluids and calories based on changes in his weight and exam findings and monitor readings.  It was akin to managing a person on the heart transplant list:  someone walking the tightrope between dehydration and fluid overload because the pump is so weak. 

He had several brushes with death in his first few months at Ranken Jordan.  The most serious was when he turned blue without warning.  Despite the best efforts of nurses, respiratory therapists, paramedics, and doctors, including those in the Emergency Room and the ICU, he stayed blue for hours.  Finally, an echocardiogram showed that his shunt (the tube placed to increase flow to his lungs) had clotted off.  A cardiac cath procedure in the middle of the night opened it up and kept him alive but by no means out of the woods. 

Back at Ranken Jordan, his journey continued.  After awhile, it almost seemed as if he enjoyed the attention his blue spells would get.  His oxygen alarm would sound, he’d fuss and cry until he was being held, rocked, and comforted.  His grandmother, Gloria, was his favorite.  He would wake up in the morning and start to fuss, getting bluer and bluer and more worked up until she arrived to reassure him that he didn’t have to work so hard.  He tried so hard to get better.  As he became more expressive, he seemed to be frustrated at the limitations his body placed on his need to get up and go.  And he hated his monitor.  Every time the alarm would sound, he’d get more agitated and bluer, starting a downward spiral usually only Grandma could break.  He seemed to be telling us, “Just let me do my own thing.  I have things to do, places to go, people to see.”  His family and doctors finally relented and unhooked the monitors.  He wasn’t growing and his lungs weren’t getting stronger, so there was little hope of making it to the “big fix.”  Almost overnight, though, the real Markel came out.  Without the beeps and pings he finally got some rest.  And, he started to grow.  No longer sleep-deprived and exhausted, he began to smile.  Naturally handsome and already bonded with many “mothers,” he was rarely in his bed, preferring instead to be up, peering over a shoulder, taking in the flurry of activity around him.  He thrived for the first time in his life.  He gained weight and had fewer blue spells.  Unfortunately, testing on his heart showed that another surgery had as much chance of ending his life as extending it.  His family decided to let him continue his journey on his own terms. 

His grandmother organized a party for his first birthday and although by then he was already starting to tire out, Markel relished the attention lavished upon him.  About a week later, his journey ended, not far from where it began.  His grandmother’s eulogy rejoiced in the goodness in his heart and how he brought strangers together and got the most out of his brief time with us.   She held the repast at Ranken Jordan to thank and recognize the staff who by their loving care had helped him move past his ailments.  If home is where the heart is, Ranken Jordan was his home.  Rather than feel sad for the loss we had experienced or by the hole he had left by his passing, we were able to celebrate the life that he had lived and the hearts that he had touched along the way.   He has left an indelible mark on all of us.