Here Comes the Sun

It's been a long cold lonely winter.

Jack and his two friends from High School and I just got home from the US Burton Open at Stratton. I am not sure what I was thinking tossing three HS boys in the car, loading up the Thule and heading north. Normally I would not take that crew to Jerry's (the local Rye spot where everyone knows your name). I did it and I am happy I did.

Jack is home, he is not in the hospital, he does not have a picc line, he is not heavily medicated. I made up my mind early on in this fight, when he was diagnosed with Cystic Fibrosis, that we were going to live life well when we had the chance. The snow was outstanding. The boys spent most of their time in the terrain park. You needed a special pass and I was so not invited. We all watched the top snowboarders from around the world compete.

It was the 30 anniversary. Burton is sick. Burton the founder of the US Open, the founder of Burton boards, native from Vermont. Everyone came. Kelly Clark, Gold Medal winner. Hannah Teter and Shaun White. Now it's been a while since Shaun has come to the open. Some at Stratton say he commits, gets hungover and backs out. I just think he has a jet, homes and better places to be (although I cannot imagine anywhere in the world that is better than Stratton). He came. They came to thank the Burtons for all they have done for the sport.

I came because we could. When your child has a terminal illness that they have yet to find a cure for, you live differently. We do, we live for today. We make it count. We go to the US Open. I think I enjoyed watching Shaun White more than Jack. I stood at the bottom of the half pipe simply shocked by magnitude of his talent.


Now my son Jack has been on his board since he was 5. He started skiing at four. This because one weekend we took Sam and Jack to Vermont, checked them into ski school and for the first time in so many years, I was free and I skied. That weekend I rented a house for the following season and enrolled all three in the seasonal program at Stratton, the Mountain I skied at since I was 8. Jack at the beginning of the next season announced he was a snowboarder. Tears tumbled down my cheeks as the dream of my spending the season skiing at Stratton seemed to fade. I called the ski school and told them the news. Jack wanted to snowboard. Now this was ten years ago and there were not that many little kids on boards. Happily Cindy, head of the program said "Mrs. Clark whatever you bring him on, we will teach him on."

So his boarding career began. And my love for skiing is stronger than ever. I have so many memories of that mountain and the times I spent up there. And now I am building even more.

When your child is sick and in the hospital you sit and wonder, will he go to Vermont again, will he skateboard again. Am I gonna walk out the doors of the hospital with him?

My fear is that I just do not think I will ever be able to go back there. Back to a place I love so much and feel I belong without, him. Because now all my memories there are tied up with Jack.

I was told today I was ruining Jack. I was not hard enough on him. How can I be? I have watched this child spend nights in the ER, weeks in the hospital, Picc Lines, IVS, No Food, stuck everywhere, stuck 15 times in row to get an IV going, put under four times. I could go on. I have watched him fight, fight for his life. I am in awe of his strength and courage as I am Shaun White's performance in the half pipe.

He is my son, and I love him with all my heart.

Everything's Alright

My brothers and sister and I are all named after saints. Kathrine, Elizabeth. Robert and David. Raised a Catholic, I went to church every Sunday. I never ate meat on Fridays during lent. I was baptized, had my first holy communion and of course my confirmation.

I believed in God and Jesus Christ. When I was ten my parents took me to see the opening of Andrew Lloyd Webber's Jesus Christ Superstar. I loved it for many reasons. It was familiar, it was what I knew. I believed it. My favorite song was Everything is alright, everything is fine.

I believed in heaven, I believed that everyone was good. I had a lot to learn.

When Jack got sick I started to question my religion. Over the years, I have spent days in babies hospitals watching my baby suffer and other babies suffer. I had to ask myself "where is God?".

I have had friends who have lost their fight, their children are gone. What God would let that happen? Some say they are in a better place. What better place than here in their mother's arms.


From the time Jack was first diagnosed, seven months old, he would sleep soundly in my arms, while I told him "everything is alright, everything is fine."

Now he tells me that. He assures me that "Everything is alright, Everything is fine." Go to sleep Go to sleep, let the world rotate without you tonight.

I once ha a vision. This little girl dressed in white came to me, and said, I am fine and I will be back to get Jack.

I know now that everyone is not good, the world is a dangerous place. But I believe that Jack is right. Everything is alright, everything is fine. Tonight.

It's Been One Year

One year ago today, after four days of fever, I reluctantly took my beautiful boy to the Emergency Room at Columbia in the city. Jack had spent three weeks there in December with Pancreatitis. Some who develop this with their CF spend a couple days in the hospital rest it, no food or water and go home. Sadly for Jack, this is never the case. Jack's is unforgiving. And after ten days in the hospital, I was told Jack needed a Picc Line.

Picc Lines provide a way to give medication or food to a patient. What I do not like about them, they require a lot of work. They are prone to infection and extremely invasive.


This particular hospitalization had been so hard on me. It had been almost four years since Jack had been in the hospital. During that time, my brother died. I realized just how devastating that was and feared it more than ever. How does a mother follow her child's coffin out of the church?

My friends and the girls never let me down. There were emails and phone calls and facebook posts. I will forever be grateful for that. My girls, strength, beauty, love and compassion, the words I use to describe them. They have their own story to tell.

However, Jack's father was not in a good place and unable to help the way he had in the past. I was alone in every sense of the word. My girls were struggling without me, Jack was struggling with me.

One year ago today, I was headed back to Columbia in complete denial. I was so sure that Jack's fever had nothing to do with his Picc line that I told the girls we would be home for dinner.

I could not have been more wrong. The girls did not see me for four days. When I came home for a change of clothes. The emergency was packed and pretty quickly I was told that not only was Jack's line infected, he now had a life threatening blood infection. He was hooked up to every monitor and that ER sprang into action. I thought at least we will get a room. Wrong again. we spent the next 48 hours in that ER. Jack almost died that first night. I had never seen him so sick.

My friends called and that helped. Having said that, the one relationship, I had but so much time and effort into, well I would rather not say what happened. Just know you find out what someone is made of during a time like this. I was alone. It was just me and Jack and we were fighting like hell.

Jack is my hero. He not only survived but at one point turned to me and apologized for me having to sit all night in a chair. Can you imagine. Where did this child come from?

It took a while, but our family has never been better or stronger. My children are thriving, their Dad is very much a part of their life and I have someone in my life now, someone who cares.

My Life With Jack: "Let Your Clarity Define You." Rob Thomas

My Life With Jack: "Let Your Clarity Define You." Rob Thomas: I know this much is true. It's been almost one year, one year since I took Jack back to Columbia Presbyterian Hospital. Almost one year si...

"Let Your Clarity Define You." Rob Thomas

I know this much is true. It's been almost one year, one year since I took Jack back to Columbia Presbyterian Hospital. Almost one year since I said good night to my beautiful boy at ten only to have him wake me up at three. Almost one year that would be the beginning to one of the worst years of my life.

I know this much is true. I love my son with all my heart. I love all three of my children with all my heart. Jack tugs at my heart the most. You see it breaks my heart, his Cystic Fibrosis and the pain that comes with it.

December 3, 2010 Jack woke me up in the middle of the night. He had been well for over three years. No signs of the pancreatitis that had landed him in the hospital so many times before. For those who do not know. pancreatitis is one of the most painful illnesses and for Jack simply unforgiving.

I knew we were in trouble when he started to get dressed and asked to go to the hospital. You see Jack had a very high tolerance for pain. And he hated the hospital. If he was asking to go, not a good sign.

Still in what has become a constant state of denial, I hoped he simply had an appendicitis. He would be rushed into surgery and home in three days.

We got to Columbia, hopefully headed upstairs only to be sent downstairs to the dreaded ER. If you have read my blog you know how much I hate that ER. Mostly, its quite scary and once you are in, you a captive and often will not be released, no matter how much scream. for days. Sadly this trip would be no exception.

Within an hour the doctors were back with news. Jack did not have an appendicitis as I had hoped. His numbers were 3.200. 50 are normal. He has having a full blown pancreatitis attack. We were going to remain captive here for months. I just sunk on to the floor and sobbed. How was I going to manage this? His dad had moved away. He had two sisters waiting for me to come home and make dinner. And the dogs needed to walked.

What upset me most, I knew how much pain Jack was in and the pain he would have to go through to get better.

So many people have told me that "you are so strong and capable" Well nothing could be further from the truth. I am coward and not at all capable. What choice did I have? Say sorry we will not be staying for Jack's pancreatitis. I prefer to be at home in own comfy bed and I do not particularly care for your accommodations and staff. For many reasons. Simply not an option.

Well my fears were realized, it was months before Jack was well. Weeks at the hospital. Sleepless nights at home with Picc lines and more trips to the Hospital, once with a near fatal Picc Line infection.

This year is now almost over. And I know this much is true. My son is the most courageous person I have ever met. He never complains. he takes each and every setback in stride and once home appreciates every day as I wish we all could. My girls are everything. They are smart beautiful and driven. With all that has happened they still continue to amaze me with their grace, beautify and compassion. I live in a wonderful community and have friends that have reached out with a phone call or text or a post on my FB Wall at the right time. It helped. I am here and we are ok because of you. I have a brother who I love with all my heart. And he has supported me and loved me through all of this.

I know this much is true. I am a lucky girl. And I am thankful for my beautiful boy who is fast asleep in his bed, in his room, while I write this.

There Will Be An Answer

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I Will Try and Fix You.

Dear Jack, my beautiful boy.

Its been a while since I have written.  I have started this journal when you were hospitalized last December.  One of many times.  Heartbreaking nights spent in the ER followed by weeks in the hospital and then home with Picc Lines and Ports.  You have always shown me how strong, passionate and resilient you are during your hospital stays Jack.

Last spring we made the heartbreaking choice to hold you back, repeat the 8th Grade.  Mostly fear that you would be unprepared, you had missed so much school, you had spent too much time in the hospital.  The decision broke my heart.  Your hospitalizations this time were particularly brutal.  Your Picc line infection, which was near fatal, took everything out of you.  Your survived Jack, you fought with all your heart and soul.

And your reward, I was holding you back.  I was making you stay in the eight grade while all your friends headed off to High School  That was your reward for working so hard to get healthy, to live.

Well you headed off to the 8th grade, your sister texted that you looked lonely in the cafeteria.  To Sam a popular Junior at Rye Hight this was devastating.  You said nothing Jack.  Not a world.

Three weeks in to the school year the principal called me into her office.  She sat me down and said we needed to talk about Jack. I just sat there ready to fight for you, like I always did.  She said "Mrs. Clark we are moving Jack to Rye High".  You had straight As and had worked so hard and done so well, everyone at the Middle School was convinced its where you belonged.  Tears rolled down my cheek.

My beautiful boy Jack, so far this life has been hard, its thrown so much at you.  I have lost count of how many days you have been hospitalized, how many needles, picc lines, IVs, ports you have had.  How many times you have been medicated with moraphine for your pain, told you were not going home.  Through it all, you have been a shining light Jack.  Your only question for the Doctors "When can I go back to the Skate park?"  You live life well Jack.  You rarely complain, You never take a breath without being grateful for it.

I will spend the rest of my life trying to fix you Jack.  I love you with all my heart.  I will make sure that the competition you won recently at the skate park will be the first of many.  I will fix you Jack.

Love,

Momma