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

Hello Old Friend.

Well, it's been a while.  While I would love to tell you, that I have not written because all is well and there nothing to tell, sadly, nothing could be further from the truth.  There are some things I just can not write about.

So rather than write about our life, I will share my impression of the new show on TV.  The Red Band Society.  I hoped when I first read about this show, it would honestly highlight the truth behind life in a babies hospital.  Not so.  I have been watching now for almost an hour and nothing looks slightly familiar to life in a Children's Hospital.  I would recognize it if it did.  I have spent months in Children's Hospitals.

Rather than tell the truth, they sugar coat the lives of children with fatal and potentially fatal diseases. Why?  It is okay for us to watch shows depicting life on the singles scene, as a housewife, as a sex addict.  When comes to depicting life with a terminal or life threatening children's disease we need to make it look like time a frat party.  This is an opportunity lost.

I think a show like this hurts more than it helps.  Life in a children's hospital is hard.  It is depressing.  It is painful.  You are a long way from home. You are not feeling good (if you were you would be home) It is not one big party as this show portrays it.  I am only sad because a show like this could bring awareness and compassion to the fight that faces so many children.

When I started this blog I thought I could easily share everything facing our family.  Some things are better left unsaid.  Jack's fight has been so difficult from the start.  But I have watched him fight, I have watched his sisters stand by his side and fight with him.  And sometimes it makes cry that I have not given them the perfect life they deserve, I know in my heart they are going to be fine.  They are going to win this fight.  Jack will be fine.

My Easter Miracle

Over the past fifteen years, I have found myself asking "Where is God?".  This Easter, I got my answer. He is here and is listening.

Raised in a pretty traditional Catholic household, we rarely missed church, always visited the Rectory, carefully chose what to give up for lent and never ate meat on Fridays during Lent.  My faith, some would say, has wavered, okay gone completely off the rails.  Since Jack and Kate were diagnosed with Cystic Fibrosis, after spending months at a Baby's hospitals, I found myself asking "Where is God?"  

This Easter weekend I was flipping channels and found myself stuck on the History Channel watching the Bible mini-series.  I could not stop watching.  Easter Sunday came, I went to church.  

I rarely go to church anymore, but there I was on Easter Sunday, in church.  No I was not wearing a pretty new dress or lovely hat, I was not with my family.  I sat surrounded by families, in their Easter best.  I felt at home, I always do in Church.

I ended up in the middle of the pew and thought to myself, if I were on the end I would feel the holy water when the Priest walked down the middle spreading it.  Literally one second later I felt a huge splash of holy water, right on my forehead.  It was as if someone was listening to me.

Finally, it was time for me to pray.  This past year for Jack has been terrible.  It started with being hospitalized for his pancreas, but soon it was his lungs.  Everyone with someone with CF in their family will tell you, it's all about your lung function.  For no reason, this past year Jack's lung function has been on downward spiral.  To add insult to injury he started to culture for an infection that he would never get rid of.  The last time Jack went to his pulmonary doctor, his numbers started with a 6, they were in the 60s!  Ninety- eight is normal.  I am not going to lie, this terrified me.

So there I sat in church, praying for Jack.  Believing in God, believing in the resurrection and what Easter celebrates and praying for my son.

Today Jack had an appointment with his Lung Doctor.  I had forgotten all about this appointment.  His Dad took him, and when he walked back in, I braced myself for more bad news.  After all, what had changed?

I asked how his appointment went, Jack smiled and his Dad smiled.  His Dad looked at me and said, ask Jack what his numbers are.   I did .. 95%!  The doctor was shocked, Jack was shocked, they were high fiving.. this was unheard of.  This was a miracle.  My Easter miracle.  Maybe God has been here all along but I just have not been paying attention.

I am so thankful for my Easter miracle.  I am so thankful for my three beautiful children and I am thankful for those numbers because that is a miracle.

PAY IT FORWARD

It is hard to believe I have a house filled with teenagers now.  It seems like yesterday I had a house full of babies.  Our house was a happy house, filled with laughter.  Jack's diagnosis came early on, seven months and with his diagnosis came fear.  Pretty early on, I learned I was not alone on this journey.  This train, my train, was filled with generous people. They were neighbors, mothers, athletes, businessmen and strangers.   Their giving arms where much longer than their taking arms.  What they have accomplished is nothing short of a miracle.

Before Jack's diagnosis,  I was blissfully unaware that disease in our country was a multi million dollar business.  I just assumed, if your child was sick,  there were doctors and scientists working to cure it.  I could not have been more wrong.   If they have a way of getting rich, they would work to cure your child's disease.  I suppose I feel fortunate that my child has a disease that there has been a lot of money raised and as such a great deal of progress is being made.  Will that progress be in time for Jack, that I do not know.

So along with keeping Jack healthy until there was a cure was the added responsibility of raising money and awareness.  This journey I started fifteen years ago, continues today.  Cystic Fibrosis, as is the case with most children's diseases, gets very little corporate funding.  Why?  Our children do not grow up, they do not become the CEO of Pepsi where they can command millions of dollars in corporate funding to their favorite charity.  Most donations to the Cystic Fibrosis Foundation are personal.  My fundraising career  started out with a cocktail party.  I divided my friends into three teams and challenged them to raise money for the Great Strides Walk.  The winning team received a case of wine.  I hoped for $5,000 we raised close to $100,000.  The checks rolled in from all over, some of the most unexpected came from families with no connection to mine.  One check for $25 came from a an electrician and his family in the next town over. Someone with a giving arm longer then his taking arm.  

Along this journey, I have met so many people who have donated money, time and anything else they could to make a difference in the life of a child with Cystic Fibrosis.  And for that I am truly grateful.  While a diagnosis like Cystic Fibrosis leaves you wondering why my child or any child for that matter. The journey you set off on will change you for ever.

Two men have changed this direction of Cystic Fibrosis, Frank DeFord and Boomer Esiason.  Each has gone so much further with their commitment to this disease than one could ever expect.   Frank DeFord lost his fight 30 years ago when his seven year old daughter died from Cystic Fibrosis after an exhausting fight.  He not only continues to make appearances, he gives speeches from the heart.  He shares his daughter Alex with everyone in that room.  After Mr. DeFord speaks, there is never a dry eye.    To relive his fight which ended tragically must be so difficult.

When Boomer son was diagnosed with Cystic Fibrosis he shared his second call was to his friend Frank DeFord.  Mr. DeFord replied that there is a reason for this.  Knowing that someone with Boomer's fame, kind heartedness and dedication would change the face and direction of Cystic Fibrosis.  It has.  For that I am grateful.  But I wish medicine in America did not require someone famous to have a child with a disease to cure it.  Not to take away what both Frank DeFord and Boomer Esiason have done for every child with Cystic Fibrosis.  They have given them a fighting chance.  They have given every mother of a child with Cystic Fibrosis hope.

While these gentleman have raised hundreds of millions, I would like to thank the electrician for his $25 check and his blessings.  You have taught me that every little bit makes a difference, it makes in impact, it gives a mother faith and hope.  Your generosity touched my heart.  I am not in this fight alone, I have the love support, prayers and blessing of so many.  I only hope that I can pay it forward in some small way to another family that is struggling with a child with a disease.

There is little hope for changing how disease are funded in America.  But now I have hope in the human spirit.  I think most, when called upon, will step up and do what they can.   I always say that I wish Jack did not have Cystic Fibrosis, after this year, I wish this more than ever.  It has been a horrible year.  But I am grateful for the journey,  along the way have met so many whose kindness, generosity, dedication and spirit have given me faith, faith in my son, faith in my community, faith in Jack's future and every other child with CF.  Thank you for that. #cysticfibrosis #rockCF #children #love #Faith #Boomeresiason

REAL SPORTS WITH BRYANT GUMBEL

Tonight at 10, on Real Sports with Bryant Gumbel, Boomer Esiason and Frank DeFord sit down for a talk.  The talk is about their connection and Cystic Fibrosis.

I remember so well when Jack was diagnosed with Cystic Fibrosis.

Let me go back, Jack was just sick, he was always sick. His doctor insisted I was over reacting, my son simply had an older sibling at home.  Interestingly, she was never sick.  One day I brought him home from his doctor, who again assured me I was over reacting. My british friend Nikki, no medical training, took one look at him and said "that child belongs in hospital".  I took Jack to a new doctor that afternoon, she saved Jack's life.  She sent me straight to Columbia.  Jack had a double ear infection, one had perferated, conjunctivitis and a collapsed lung.  Dr. Quittell took care of my son that day.  She told me "Liz I would like you to bring Jack back to test for Cystic Fibrosis.  I do not think your son has this so do not google".  Being the good catholic girl I am I listened.  So three weeks later, when I was sitting in her office after Jack failed the test, tears streamed down my face when Dr. Quittell said "things are so much better now, some children with CF actually live to 18 and go to college".  I had no idea this disease was terminal.  That day had found out I was pregnant again.

After that, I went straight home, and I googled.  I am across a book about a girl who had CF.  I ordered it.  I sat down to read Alex the Life of a Child and did not get up till I was finished.  The book was written by Frank DeFord.  I later found out he was a famous sports writer.  His book is so beautifully written, I cried through it.  Without holding anything back, Frank DeFord told the story of his princess Alex who died when she was 8.  I guess what I liked best about the book was the Mr. DeFord was so mad about this disease.  I knew exactly how he felt.

I met Boomer Esiason at Columbia.   His son was being treated by Dr. Quittell, Jack's doctor. He was lovely.  Not long after that, I heard Boomer speak for the first time.  He and his wife Cheryl were living in Cincinnati.  He was the QB with the Bengals.  After reading Frank DeFord's book they decided to raise money for Cystic Fibrosis.  And with tears in his eyes, he described the call from his wife four years later.  He was in NY, just signed with the Jets,  he had to come home Gunner was sick.  Gunner had Cystic Fibrosis.

I admire both of these men for many reasons but mostly one.  They stood up.  They have raised money and awareness for Cystic Fibrosis and in doing so have changed the outcome for children with this terminal disease.  They are on the brink of something so exciting.  It will change the lives of children and their families with Cystic Fibrosis. Going forward, this will be the blueprint for other children's disease.

Mr. DeFord lost his fight in 1980, yet he has continued to make appearances and speak on behalf of CF Foundation.  I was fortunate enough to be a Cipriani's in NYC to hear him speak.  He told a story about his beautiful daughter Alex.  She was small, most children with the disease are small in stature,  she was lovely, beautiful, smart, funny and sensitive.  Mr. DeFord talked about one night in particular when he was having a conversation with Alex about princesses, Alex's favorite topic.  Alex told her father "I could never be a princess".  Her father asked "why Alex, why can't you be a princess".  Alex replied, my crown would fall off when you did PT in the downward positions on me."  PT is something every child with CF has done everyday sometimes three times a day.  You hold them in many positions and pound on them to get the mucus out of their lungs.  Some of the positions are in the downward position.  which of course if you were wearing a crown, it would fall off.   Everyone in that room had tears in their eyes.

A lot of money was raised that night.  Mr. DeFord could easily have walked away when his fight was over in 1980.  He did not.  He stood up.

Boomer Esiason, professional athlete stood up.  His foundation has done so much for children with  Cystic Fibrosis.  He has tirelessly put his family on the forefront of this fight.  He has accomplished more than he will ever realize in changing the hopes and dreams of children with Cystic Fibrosis.  He is  a hero, he stood up.

Children's diseases in America are grossly over looked by corporations and the government when it comes to funding.  If there is no money, there is no progress.  I followed the blog of mother.  Her child had a rare form of cancer.  There was a drug that would have helped her son, but no drug company would produce it,  the drug company could not enough money.  Her son died.

So if you have the opportunity to stand up, to make a difference in the life of a child or a family with a child with a disability like CF or Autism, or Cancer, stand up.  Make a difference.  Then go home, hug your children.

Tonight I will be watching Real Sports with Bryant Gumbel.  I admire these two men.  I admire them for their compassion, the drive and determination, but mostly I admire them because they stood up.  These men will touch your hearts. 

Time

"All of my possessions for a moment in time."  Queen Elizabeth I

Sometimes I wish I could go back, go back in time, just for a day.  When they were little, life just seemed so carefree.  Yes Jack and Kate have Cystic Fibrosis, but to look them, you would never know it. When they were young, before Jack got really sick, we lived life, everyday like it was our last day.  Whatever they wanted or needed I gave them.  Christmas was heaven, parties with friends, Vermont, a dream.

Early on we took up going to Vermont the day after Christmas.   We had house with a huge fireplace and no TV or Internet of phone service.  Our days were spent skiing, our nights in front of the fire playing all kinds of ridiculous games.  I would trade anything  to go back.  Just for one night.  All three in their jams, exhausted after a day of skiing or snowboarding, in front of the fire.

Later, it seemed it was always around the holidays that our lives would be shattered when Jack, in the middle of the night, would get sick.  With little or no warning, we were on our to the hospital never knowing how long that stay would last.  How many nights would I sleep on chair, how many days away from my girls.  And Jack, how much pain before he just could not take it anymore, before his body said, enough is enough.

Last year I was really unsettled in December.  I just felt something was wrong, terrified something was going to happen, terrified Jack would get sick.  We made it through the holidays and there was a sigh of relief as we all spent the first day after Christmas in 22 inches of snow at Stratton.   But that night, in the middle of the night, Jack got sick.

His sisters, well I never give them the credit the deserve, they take care of Jack, they get him packed for the hospital,  they tell me to pull myself together.  They have lived this, with Jack getting sick, really sick, for their entire lives.  I never quite get used to it.  I still stand in the emergency room, with tears pouring down my face saying, "my son has pancreatitis and you need to get a line in him,  NOW."

And then I stay with Jack, some think I just wait... wait for them to fix him and send us home.  No, I explain his history, I demand his medication be given in a timely manor, I thoroughly go over his history and play an active role in every decision that is made and make sure costly mistakes are not made.  I sleep on a chair.  I rarely eat, Jack can not it just does not seem right.  Kate, my saint comes to visit and stay with Jack and Sam makes sure our family stays "Normal".  Which is all she ever wanted.

So it is that time of year.  My wish is to go back.  Just for one moment.  Back when I was not afraid.  Back when we were a normal family.  Just one day.

I live in fear of the holidays and this year is no exception...

But this year is different.    I know that whatever happens me and my girls will be able to take care of Jack.  We love him with all our heart.  He is our Christmas miracle.

Merry Christmas to all.....

FAITH

"Sometimes Life is going to hit you in the head with a brick.  Don't lose faith."  Steve Jobs

Often I have been given way too much credit when it comes to taking care of Jack.  One thing is for sure, Jack has always been the one to keep the faith.  Know matter what, Jack has faith that everything is going to be all right.

A little about Jack, as soon as he could walk he ran.  From the start Jack liked going fast.  He would jump on his bike and peel off toward town, which was fine expect he was four!  I told him no biking to town alone so the next day he took the keys and started the car.  He was going to drive to town.

His first day on skis, I went to find Winslow his instructor (a very cute aussie) and get Jack.  At the magic carpet they told me Jack was on the chairlift.  Really, I said this is his FIRST day on skis.  The calmly told me he wanted to go.  Of course he did, he would have gone on the Gondola and to double black if ya let him.  I told them, you have to say "No Jack"

But honestly there was no stopping Jack. If he was not peeling through the terrain park on his snowboard, he was flying through through the skatepark on his skateboard.  He liked speed, and he was fearless.

Once his father thought he would teach him a lesson and went off while snowboarding with Jack, thinking Jack would get scared and follow.. nope. That day I was skiing with a friend and on the board at the chairlift there was a note. Mrs Clark please come to the front desk.  I thought excellent, they found my car keys.  Wrong. When I got to the front desk, the lost and found, my six year old son was sitting on it  His father came in right after me. Deer in the headlights, he claimed they got separated.  I told him, you get separated from your 40 year old friend, you lose your six year old child.  But there was no stopping Jack.

At 6 Jack went to the hospital for what we thought would be two days, stupidly I told Jack he did not have to wash his hair till we got home, he left two months later with dreadlocks.  That hospitalization changed everything.   Jack was diagnosed with Pancreatitis, it was unrelenting.  His doctor was clueless when it came to handling it.  She thought a little rest and an IV.  She could not have been more wrong. Weeks later,  a dozen blown IVs, hours of pain and frustration, a massive weight loss Jack was not closer to getting better.  He was getting worse.  I called my friend from Rye, we lived around the corner and our kids were great friends.  Her brother in law was and is Head of Surgery at Columbia Pres.  He saved Jack's life.  He sent Dr. Stevens from the adult side.

Dr. Stevens did an ERCP.  They put Jack under and took a look.  I sat in that waiting room, confident he would come out and say, I have fixed your son.  Nope.  He came out and said "I have never seen this in a child.  I do not know what to tell you Mrs. Clark."  Tears streamed down my face and I went to Jack. He was crying and in so much pain.  It was devastating.  This disease is devastating.

Later that week, they decided to put a provac port in.  This would feed Jack, administer medication and require a lot of work.  Putting Jack under again was heartbreaking, he was so scared.  I was with him in the OR, I leaned down and quietly told him "Jack this is a magic port, with this port we get to go home Jack.  This is a great day".

He come home two days before christmas. His sisters who adore him were waiting at the door. They prepared a special dance for jack and hugged him till he could not take anymore.  Our friends decorated our house that year. Our house never looked more beautiful.  It was decorated with love and compassion.  We are blessed with wonderful friends. Jack's faith kicked in and he was snowboarding five days after.  Port wrapped, Jack took off.  Jack had enough faith for both of us.  He would say mom, I am good, I am okay.

I have lost count of how many times Jack has been hospitalized since.   After each hospital stay, usually picc line in his arm, as soon as he could, he would head off to the skatepark or terrain park.  His faith was remarkable.  Mine not so much.  I would breakdown, cry, drink wine, cry more, post on facebook, call anyone who would take my call. Which most of my friends did.  My friends were wonderful.  They drove my girls when I could not, they made meals when I could not.  They listened while cried. They helped me, I needed them because I did not have faith.  I was terrified.

This year Jack lost his faith. Jack, Sam and I were up at Stratton last Christmas. He was boarding in 22 inches of snow.  He stayed on his board till the lifts closed.  My legs were burning by 2.  That night his pancreas took over and we went back to westchester and back to the hospital.  This time was different.  That smile was gone.  He just was not coming back.  He was not okay.

I have to stay I am not all surprised.  I often thought, that everything this child has been through, the pain, the hospital stays, no food all of it had to be going somewhere.  I have often said his courage and faith were remarkable and it is.  This time there was no faith left.  I felt him slipping away, months went by.  I had no idea what to do. Finally,  I found help.  I realized it was my turn to be strong, to have faith.

I  have enough faith for both of us now.  I have to say its been months, but that smile is returning to Jack's face.  Jack, his sisters and I are going back to Stratton at Christmas and he can tear through the terrain parks and go to their indoor skate park at night.  We can but this horrible year behind us.  Because Jack, I have enough faith for both of us.  I know how strong and courageous you are because I have been with you every minute.  But know now  you have me and your sisters who love you.  It is our turn to take care of you.  We have faith Jack, everything is going to be all right.