Sunday, December 28, 2014

TWO YEARS AGO TODAY

TWO YEARS AGO TODAY



Two years ago today we were at Stratton in Vermont.  Sam, me, Jack and his friend Jake.  We had checked into this great condo on the mountain the night before, we woke up to 5 inches and it was still coming down.  We parked in Lot 2 and headed to our locker.  That day the snow came down at a rate I have never experienced.  The whole mountain was un groomed and we were having the ski day of our lives.

Sam and I battled the snow till 3, exhausted we headed for the condo. Our car, in Lot 2, was buried under 16 inches of snow!  Jake and Jack literally took the last lift, just refusing to stop.  By the time they made it back we had a fire going.  All anyone could think about was what a great day tomorrow would be at Stratton.

I have been skiing at Stratton since I was 8 and so have my kids.  I was so tired of Build a Bear,  that I called Stratton Real Estate rented a house for the season and enrolled them all in ski school.  They were 6,5 and 4.  The first day of ski school,  I went to pick Jack up on the magic carpet and very cute instructor told me Jack was on the chairlift.  I said, are you out of your mind, it's his first day.  They replied, he wanted to go.  Jack would probably ask you to go heliskiing if he thought you would let him.  You have to learn to say NO to Jack.  But there was no stopping Jack.  He switched over to snowboarding immediately.  I cried as I called the ski school saying Jack wanted to snowboard, sure they would throw him out.  The said "Mrs. Clark what ever you drop him off with, we will teach him on."  The rest is history.  Jack was on that board 40 times that winter and the winters following.  He quickly discovered the woods and terrain parks.  He was passionate about that board.  Which is why what happened next was so devastating.  Stratton had always been such a wonderful place for our family.  We where there for the week, sixteen inches of fresh snow and more on the way.  Looking forward to another great day.

There was nothing great about the next day.  Jack woke me up at 6 am.  He was having an episode of Pancreatitis.  We, as a family, had dealt with this since he was 6.  But this time was different.  This had never happened in Vermont.  I had a four hour drive home and had no idea how I was going to get him off that mountain.  Pancreatitis is excruciating.  The first thing they do, hook Jack up to an IV and pump morphine into him.  Well most mothers worried about Asprin. I was pumping my son full of morphine from the age of 6.

Sam took control of packing the car,  I called Jack's father and then gave Jack two Motrin PMs hoping the car ride would be bearable and we headed for home.  Right away the engine started to overheat.  I pulled into a gas station and looked for help.  Two woman came to my rescue and filled the car with coolant while I stood there tears streaming down my face explaining  had to get my son to the hospital.  Once we were on the road again, Sam turned to me and said "Mom you have to pull yourself together!"  She was right.

We got home and I got Jack to the hospital, we had switched hospitals and this was our first stay at Westchester Medical.  Getting admitted could take days at Columbia.  But Westchester was more efficient.  When then nurses took Jack in and asked what was going on, I told them he has Pancreatitis. They did not believe me, they never do,  he did not seem to be in a high level of pain.  Jack learned early on how to manage his pain he hated the hospital.  They asked me how I was so sure.  I explained since the age of 6 Jack has been hospitalized more times than I can remember with pancreatitis.  They pushed for more details.  Like was the pain coming from his lower back.  I responded by telling them I knew he had pancreatitis because he gets this look in his eyes.  Surprisingly they believed me and hooked him up to an IV and started the morphine before the blood work which would confirm he pancreatitis came back.

The blood work came back, I was right.  One of the few times I wish I were wrong.  Jack got admitted and we settled in for a two week stay. This stay went pretty smoothly, two weeks and four books later Jack was discharged.  For the first time ever, without a picc line.  The picc line is a way to provide food to Jack.  Jack's pancreatitis is unforgiving and in the past simply resting it a couple days without food or water would not work.  He required a picc line.  And would be sent home with it.  Most countries will not discharge a patient with a picc line.  They are highly suseptible to infection.  The infection can be deadly.  And in the past, Jack has had a picc line infection.  Which I can not talk about.  The memory is too painful.

Emotionally, Jack had a harder time coming back from this hospitalization.  He did not snowboard for the rest of that season.  The year after, he did not get on his snowboard.  Jack loves snowboarding, this was heartbreaking.  In the past, Jack really managed his emotional state well.  As soon as he left the hospital, he was on a board, a skateboard or snowboard, any board.  This time he struggled and for the first time, I was at a complete loss.  I thought we had learned to handle this shitty disease.  He better than the rest of us.  The shitty disease that would without warning cause horrific pain. take him away from his friends, school and family, leave him without food and water for long periods of time.  This time was just one time too many for Jack.  I wondered if he would ever get back on that board.  Head off to the terrain park and do all the things I would tell him not too, get way to much air, go over all the rails travel at breakneck speeds.  I was banned from the terrain park for many reasons which I will not get into here.  Except to say that apparently screaming, slow down or go on the smaller jump as he headed for the huge jump is frowned up in the snowboarding community.  I am his mother.  My job is to protect him.   Even I could not protect him this time.  I wondered if my fearless son would ever get on that board and head for the terrain park.

This morning, two years to the day of that epic snowfall and the last great day Jack spent on his board, Jack got out of bed, loaded up his gear.  His dad got him a great helmet and jacket and goggles for Christmas.  He got in his car and headed to Mountain Creek with his crew.  Tears tumbled down my cheeks as I watched him leave.  I never thought I would be so happy to see him leave.

#Cysticfibrosis #cf #cfforg #live #breathe #love #mybeautifulboy #strattonmountain #snowbard

2 comments:

Anonymous said...

Keep on keeping on - Jack, Mom & family. So strong.

Candace Hudson said...

Time flies and is full of changes. The least we can do is to face up to that set-up and to have as much medical assistance as possible. Anyway, I really hope that Jack is faring better these days. I wish your family all the best!

Gabriel Wood @ MedCare Pediatric Group, LP