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 

If your baby tastes of salt he is not long for this world.

Its an old Irish saying.  When Jack's first sweat test ( a test to diagnose Cystic Fibrosis) came back borderline I hit the internet.  This Irish saying just stuck with me.

Jack at seven months old had a cold that would not quit, horrible reflux issues had not slept since the night he was circumsized.  Finally we had a possible answer.  Cystic Fibrosis.  But I did not like this answer and went to the internet to prove they had no idea what they were talking about.  Not my beautiful boy.

"If your child tastes of salt he is not long for this world."

That night after everyone was asleep,  his older sister all tucked in, I sat with jack nursing him and rocking him, I licked his forehead.  I did it again just to make sure. It was salty.  He tasted like salt.  The tears rolled down my cheek as I rocked Jack to sleep that night.  And for so many nights to come.

I have not thought about that much till tonight.   I went to New York City to a gathering of Doctors, Families, Children and Drug companies to hear the latest about Cystic Fibrosis.  There was a new drug, a little blue bill from a company called Vertex.  This drug did not address the symptoms of Cystic Fibrosis.  It stopped the disease.  CF is a progress disease, once it gets some traction, you can deteriorate at an alarming rate.  It is a fatal disease, there is no cure.  Could this be the call I have been hoping for?

The drugs are gene specific now so for some, the news is very encouraging. Not for me,  no good news yet.  So I listened to a Doctor tell me the good news for other mothers.  I listened to the father making an passionate plea for $50,000.  And then there was Emily. Beautiful Emily twenty something, CFer.  She was there to talk about how she participated in the trial (she had the right gene) and how effective the drug is.  I listened while she talked about feeling better.  She was able to breathe, able to go for long walks, workout without losing her breath.  Her lung function was improving.  Unheard of.  Then she said after completing numerous test (all positive) for her doctors, she did her own CF test.  She  licked her arm when no one was looking, for the first time in her life, she said she did not taste of salt.  Thats when I started crying.

For the first time since this journey began. I truly have hope for all the mothers there waiting for their call or waiting for that moment when no one is looking, that they can lick there child's forehead and not taste salt.