Thursday, April 26, 2012

My Life With Jack: She is beautiful Mrs. Clark

My Life With Jack: She is beautiful Mrs. Clark: I have lost count of how many times during my stays with Jack at Columbia Pres I was told "she is beautiful". Jack dressed in a hospi...

She is beautiful Mrs. Clark


I have lost count of how many times during my stays with Jack at Columbia Pres I was told "she is beautiful". Jack dressed in a hospital gown, with long hair, gorgeous eyes and ever present smile was beautiful. My regular response "thank you, he is my favorite". Of course immediately the nurse, doctor, intern, resident who said it apologized. No apologies necessary, Jack is beautiful. Over the years Jack's hair has come into play in many discussions. Jack has a gorgeous head of hair. When he was younger I worried what Sam's reaction would be when she figured out Jack's hair was gorgeous. Sam, my oldest, tall, athletic, smart, never lets anyone get in her way. It took a while, I think she was teen when it finally dawned her that her brother had the hair the family. My brother Rob had the hair in our family. Jack has his hair, beautiful, dirty blonde, thick, just the right curl. That was not all Rob had. Once his closest friend Thatcher asked if it bothered me that Rob got all the brains in the family. I looked at him and said "No, what bothers me is he got the great legs." I wanted those. I knew that from my history, my brother's hair was a huge bone contention with my father. It seemed no matter what he accomplished, his hair was always on my fathers mind. I am not sure how many time he said, "You need a haircut" Rob took course at PU, when he was in HS. My father said "You need a haircut". My brother was PG a Lawrenceville, two were accepted that year, my father said "you need a haircut". Apparently, he was offered a scholarship at the Stratton Mountain School. My father never told him that, but he did tell him "you need a haircut." Early on, I decided my children will chose the length of their hair. Yes I decided that after my son was diagnosed with cystic fibrosis. At seven months, I would hold him and rock him to sleep, not knowing what was in our future, how long my beautiful boy would be with me. I held true to my hair promise. When Jack was hospitalized, just after his sixth birthday, just after halloween, I told him "you do not need to wash your hair or get a haircut until you come home". I was told he would be home in three days. It was eight weeks, and he came home sick. He was not better, he was not cured. They gave up and sent home, with a provac port from which I administered medication and food. I was now in charge of Jack's life. He came home looking like a hippie. He had dreadlocks. I stayed with my promise and he had not even washed his hair. The day before he left, the day before Christmas, Jeter came to the hospital. He brought gifts for each child. He knew their names and their stories. Jeter stayed for hours. The clip that made the news was Jack with his dreadlocks sitting on Jeter's lap. I do appreciate Jeter. He is a very compassionate man. I for one appreciate what he did for all of those sick children at Columbia that day before Christmas. I have gotten off track here. Jack is my beautiful boy. I love him with all my heart and all his hair. I feel everyday I have with him is a gift. I think he is beautiful. To all the nurses, residents and doctors at Columbia who looked at Jack and said to me "she is beautiful". Thank you. Thank you for taking care of my beautiful boy. More importantly, thank you Jack for helping me find my way in this world. You see, you are my beautiful boy, you are a gift. Our babies, these children, they are ours for a bit. Sometimes they are with you longer, sometimes not. Love them.

Thursday, March 15, 2012

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.

Thursday, January 19, 2012

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.

Wednesday, January 18, 2012

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.

Tuesday, November 22, 2011

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.