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.

Tuesday, October 25, 2011

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.



Tuesday, October 4, 2011

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.

Friday, September 30, 2011

She is gone ...

and she is never coming back.

Today someone from the past said "you are not that girl I met 30 years ag .. ".

Well she is gone, and she is never coming back.  When I was in college, I was so naive.  Simply put, I wanted to have babies and be a mother.  In order to accomplish that goal, yes get married.  Those were my priorities and in that order.  I even decided to date tall guys because I wanted my girls to have long legs.

The father of my beautiful babies is 6'4", my girls have legs that go on forever, and so does my beautiful boy.

For years I lived the dream.  I had a beautiful house in Rye, home to my three gorgeous babies tons of wonderful friends with bundles of there own.

My marriage was far from perfect, but that was incidental.  I was happy, so very happy.  Three babies in three years.  I loved being pregnant, I loved newborns and I loved toddlers.  Sam my oldest was wise from the start.  She hit all her marks way before she was supposed.  Thankfully, She was the only one had the time to read What to Expect the First Year.  All was going well.

Then Jack my baby boy got sick.  He got really sick.  I was told again and again there is nothing wrong with your Mrs. Clark other than he has an older sibling at home.  Finally my BFF Nikki declared Jack belonged in hospital (she is british) and I took him to a new Doctor.  She sent us to Columbia.

Well you know the rest.  Jack was sick and the baby I was carrying was too.  Life as I knew it would never be the same.  Nothing in my past prepared me for my future.

But I have learned is that life is a gift and so are my beautiful children.  Sam is a wonderful older sibling.  she is great role model, fabulous student athlete and driven.  Also she treats them as any older sibling would...

Kate the baby, is my baby.  She is a doll.  She is the self appointed care taker of her brother.  Sweet, smart beyond her years and very sensitive.  She reads anything and everything she get on hands on and has a vocabulary four times mine.

Jack, my beautiful boy continues to surprise me with his strength and courage.  As anyone who is familiar with this blogs knows .. last year fucking sucked.  jack was so sick, hospitalized, sent home with a pic line he missed so much school.  But he survived.  he lived.  He fought.  His reward for that, we held him back.  So he watched all of his friends go off to High School.  He stayed behind.

He did not complain, instead he got As, he worked hard and last week he moved up to HS.  He is back with his friends.  I teared up when the principal told me this news.  I told them, I wish you could see how strong he is when he hospitalized.

I am so off base at this point, so back back to the beginning.  That girl is gone, the one in her cute little bright green sun dress.  Instead I am here.  I am the mother of three beautiful children, two with Cystic Fibrosis.  They have given me  a purpose, filled my life with love and laughter and taught me there is so much more to life than the right dress.

I am glad that girl is gone.  She did not know the first thing about what is really important.  I survived and I learned everything that is important in life from my beautiful children.  Her Beautiful Boy.

This is me today.

Tuesday, August 2, 2011

Happy Birthday My Beautiful Boy!

Tomorrow baby you are going to be 14 years old. You fought hard for this birthday Jack. The year you turned six, you fought hard for that birthday Jack. You entered the hospital for what we thought would be 48 hours. Nine weeks, two surgeries, ten blown IVS, four specialists and one Broviac Port later you came home two days before Christmas. You were not better, they just gave up, sent you home with an invasive port and enough medical supplies for third world country and told me, I was in charge.

Eight months later, I was an unwilling expert at taking care of a Broviac port. That year was behind us. More followed each of them three years apart. And then just when I thought I could catch my breath, the pain was back and we started all over again. This year, the worst by far, hit hard. First off Jack I knew that a picc line infection could be fatal, I was so not prepared to see you that sick. It scared me Jack. I have never seen you like that. For the first time I realized that one day we could be in Vermont, skiing and playing monopoly and 48 hours later you could be in Columbia's emergency room, every monitor available hooked up, fighting for your life.

Your birthdays are hard Jack, you getting closer every year to those statistics. Are you going to be part of the 50% that celebrate your 30th or part of the 40% that never see there 20s. What's it gonna be? Either way, with each birthday we are edging closer to those statistics. The ones that I never like to think about. The statistics I think about only when you are in the hospital or on your birthday.

I know I should feel confident Jack, you have such a strong will, drive and determination. You have never once felt sorry for yourself and in fact never talk about the hospitalizations. You have a love for life and an appreciation for it. Will that be enough?

I know that I am now going to pack your trunk for camp and I am absolutely heartbroken. A week without you? I will miss your smile most Jack. A week just seems so long. If I can not bear the thought of not seeing your smile for a week, how am I ever going to survive...

Stay with me Jack. I will Fix you. I promise.

Wednesday, July 13, 2011

MY LIFE WITH JACK: My Brown Eyed Girl.

MY LIFE WITH JACK: My Brown Eyed Girl.: "Its been a while. One summer when Jack was four, long before he got really sick, we took a trip. We went for a four day sail on Brown E..."

My Brown Eyed Girl.

Its been a while.

One summer when Jack was four, long before he got really sick, we took a trip. We went for a four day sail on Brown Eyed Girl. She was a beautiful 44 foot sail boat, Drew was our captain and Mimi his wife the main crew. It was the only time that we just brought Jack with us. Mimi and Drew Shea brought their four year old Haley and Jack's bud. Haley like her mother had a very strong spirit and was already an avid sailor. We left Stonington Harbor en route to Newport RI. I have been many times, but coming into Newport on the water... well it was truly something I will always remember. We met up with the a the rest of AYC American Yacht Club from Rye NY. We docked and headed off for a BBQ, Drinks and a great first night.

Jack loved the water. He settled into life on the boat effortlessly. While at the time Jack had been diagnosed with CF and had been to the hospital once, I had no idea that a few years later we were about to sail into the roughest seas ever. I cherish my memories from that trip. Jack new nothing but happiness. Life had been so good. He went to the nature camp. dressed in his button down, and slacks, pushed his red car or anything he could find with wheels, and finally appeared to be potty trained.

I will always remember that time on the Brown Eyed Girls with Jack. Haley and jack bunked in the bow of the boat. They woke up having hilarious conversations. They loved life on the boat. And I must say, we enjoyed nothing but smooth sailing, well until the last day. As long as there was a shower wherever we docked. Mimi liked her shower, and so did I.

My favorite stop was Shelter Island. I learned a lot about boys that stop. We put our anchor down in the bay. Mimi made a call and a gorgeous boy showed up in a launch and took Mimi and me to the Club. We showered and ordered Sea Breezes, the bar tender instructed to have them on deck so we could see the sun set. It was Lord of the Flies back on board. Jack and Haley were jumping in naked, the dads had no control over the situation at all. Jack loved every minute of this freedom. He was so happy, no idea the rough seas ahead.

Mimi and I made our way back and now it was the guys turn to go a shore and shower. Drew tried to fire up the launch from the boat. He was huffing and puffing but he could not get that launch to start. Mimi and I said we could make a call and that cute boy would come back. Drew refused he was going to get to shore on his own. A guy thing. Finally he did. Mimi and I settled in with Jack and Haley. We had wonderful night rocked to sleep by the gentle waves.

It was the last day we encountered some rough seas, and I watched as Drew took the helm and sailed our boat through the current. Jack and Haley, life preservers on, held tight and seemed to enjoy the ride. I had know idea the rough seas that were ahead for me and jack. But like our time on Brown Eyed Girl, Jack handles whatever comes his way.

He loves when the seas are calm. He lives every day like its his last. He is on from the time he wakes up. But when we hit rough seas, he takes the helm, and does what he needs to do to get to calmer seas.

I love my son. I admire him. his strength and courage. I will be here to navigate those seas with him, wherever that is.

Wednesday, June 8, 2011

Why Me Part II

That is the question I most feared.

Why you Jack? Why were you born with Cystic Fibrosis, a terminal disease that causes your body to die slowly? The mucus that should be thin and watery is not. It's thick and provides the perfect breading ground for bacteria to grow in your lungs. Initially we will fight your infections but eventually, your lungs will have so much scare tissue they will not function.

And in addition you pancreas is a mess. You get recurrent bouts of pancreatitis. Its "the drinking man's disease", the next doctor that jokes lay off the beer, I am going to slug.

We live in a world where if a child is not selected to play Varsity, the parents ask "why us". If your nail polish color is not just right, if you can not get a cab the second you want, if you can not get a reservation at a restaurant you dying to go to, if someone sent you an email you do not want to receive, Why me?

My beautiful boy has spent months in hospitals, gone months without eating, never asked why me?

I love this child with all my heart, I am a better person for having him as my son. I do not have any answer.

Why you jack, my beautiful boy I will promise to love you with all that I am, I will fight this disease with you. I will question doctors, yell at interns and fight the school board on your behalf. There is no answer to your question, why me? but we will fight this Jack, we will fight until no beautiful little boy looks at their mother with tears in their eyes and ask, why me?

Why me?

Tonight, Jack, with tears in eyes, asked for the first time, why me?

Recently we have been trying to decide about whether or not to send Jack to High School. He missed so much of the eight grade. He was sick, he was so sick, he almost died this January. All I could think about was keeping him alive. Since he has been home, his father and I have worked tirelessly to find a new doctor, one more capable of handling Jack. His education seemed secondary to me.

Jack, like his sister, is bright. Sam is a sophomore, She is 3.8 grade point average, AP student, award winning writer, Varsity Swimmming and Varsity LAX. A bit hard to follow.

I want Jack to go High School fully prepared. So repeating, a PG year in middle school, seemed a good idea to me. To him.. Jack wants to stay with friends. He wants to go High School, He wants to be like everybody else.

What do you tell your beautiful boy with a terminal disease, who has seen more pain and suffering. Shown me courage and forgiveness. Why you Jack? My head was spinning. How could I tell him, I have asked that question since the day they told me you had Cystic Fibrosis. I have cried, I have wished it were me. I have been so angry at your disease. I have asked how could there be a God, why would any God would let this happen to my beautiful boy.

I answered Jack's question, why me? I felt he deserved an answer. I told him what I wish many doctors had been honest enough to tell me. I don't know Jack. I wish it were me, I wish I could take this away, make it better, that's what a mother is supposed to do. I know this much is true, I know this is your thing, and you have weathered it with courage, strength, forgiveness and resilience. Those qualities will serve you well going forward.

I also said, that I think there should be an award at school, right along with the athletic and academic awards, you deserve it and you earned it.

Then I hugged him and held him. I told him I loved him and I would always be there, In my heart I was hoping and praying he would always be here. With me, where he belongs. I just can not lose this child. I can not lose this fight. And no mother should have to.

Good night my sweet boy.

Tuesday, May 17, 2011

Frank DeFord

Jack was diagnosed with Cystic Fibrosis when he was ten months old. Three months later his sister Kate was born, she too has Cystic Fibrosis.

Early on, in an effort to help, I was told so many things. "God only gives you what you can handle", "he will be in a better place". I know they were said to comfort me, but what gave me the most comfort, a book written by Frank DeFord. "Alex, the life of a child". Frank DeFord, a sports writer had child with Cystic Fibrosis, her name was Alex. Alex died after a very difficult fight with Cystic Fibrosis. Alex was seven.

Her father was angry with her disease. His book was honest, open and heartbreaking and it helped me. One story he told about his daughter Alex was my favorite. Alex loved everything to do with princesses (just like my kate), but one day she told her father "Daddy I could never be a Princess". Her father asked "Why Alex". She said daddy my crown would fall off when you give me PT. Pt is something you do everyday to a child with Cystic Fibrosis, you pound on their chests to loosen the mucus, in many different positions, many require them to be upside down. Alex was certain her crown would fall off when she was held upside down for her PT.

Frank continued to lend his name, support, and his experience with Alex long after she had died to raise money for Cystic Fibrosis. I met him a year ago and thanked him for writing his book and told him it helped me. He immediately said "things are so much different now", to try and put me at ease. But they are not. We are members of the same club. The club no one wants to be a member of. We left for the hospital to have a baby that had a wonderful future ahead of them.

So to everyone who has read my blog. Thank you. Make a difference, support children's diseases, you are their hope. They are our future.

Thank you from the bottom heart for all the kind words, emails, all the suppport. You make a difference. You are helping.

Elizabeth Clark

Mother of three beautiful children. Two with Cystic Fibrosis

Wednesday, April 27, 2011

A Night for a Cure

Tonight I am hosting a party at the Rye Road house, to thank everyone for the love and support my family has received especially this past year.

Also I am asking for support for the Cystic Fibrosis foundation. THe CF foundation has made great progress in finding a cure for Cystic Fibrosis. It is also a model for all children's diseases, as raising money is a challenge. Children's disease rarely receive corporate funding. Children with CF do not grow up to be the CEO of coke, they die.

Thirteen years ago today, my ten month old Jack was diagnosed with Cystic Fibrosis, at the time I was five months pregnant, Kate too had CF.

Jack had been sick and we ended up at Columbia Presbyterian Babies Hospital in March 1998. Dr. Quittell took care of Jack that day. In passing she mentioned doing a test for CF. She told me "do not google it, I do not think Jack has it". In fact there was a 95% chance he did not. Being the good Catholic girl I am, I did not.

Two weeks later, after the test came back positive, the first thing Dr. Quittell told me "Liz, many children with Cystic Fibrosis are reaching their 18th birthday". Tears streamed down my cheeks, I had no idea this was a terminal disease.

Of course the first thing I did when I got home was hit the internet. I called Dr. Quittell daily with "cures" I had found. What was I thinking, the top CF specialist in the country, she treats Boomer Eisiason's son, had missed something. She politely took my calls for about a day than she told. "Liz I will call you when there is a cure".

So I started waiting, waiting for the call, waiting to see if jack and Kate would live or die.

I decided early on that I wanted my children to be known as Jack and Kate who have CF, not those two kids with CF Jack and Kate. And we set out to live our lives. But in the beginning, in the dark night, I would rock Jack to sleep and say "stay with me Jack, do not leave mommy". Having a baby with a terminal disease is so terrifying, I was so afraid he would be scared and alone if..

This past winter has been difficult for Jack and my family. He has spent over four weeks at Columbia Presbyterian hospital. Times like these are so difficult on my whole family. Sam my oldest shows such strength and resolve. She is an honor student, an athlete and has my heart. Kate, just 13 months younger than Jack takes over the role of caretaker and companion. She plays endless games of Life, watches every Jack Sparrow move and of course the Simpsons with Jack. And Jack.. Jack has seen more pain and suffering than most do in a lifetime.. yet he is courageous, strong and most off all forgiving. He is so much more forgiving of this disease than I am. He always says.. its not that bad.. i will be out in a few days. And even with a pick line in his arm or a tube down his nose, as soon as he is able he heads off to the skate park.

During Jack's last hospitalization I found myself whispering in his ear when he was asleep. "stay with me. Don't leave me". This time it was not the fear that he would be scared or alone, it was my fear. I do not know how to live without Jack.

There is still no cure for Cystic Fibrosis, all I have is hope. I am surrounded by that hope tonight. I know that I may never get that phone call from Dr. Quittell. But someday, a mother will get that call and this fight will be over and we will have won.

support my family in the fight for a cure: CFF.org Great Strides .. Team Clark Team Leader: Elizabeth Clark


Tuesday, April 12, 2011


Jack and me

Jack was diagnosed with Cysitic Fibrosis thirteen years ago today.  At the time I was told "many children with CF were reaching their 18th birthday".  Jack is currently 13, the idea that I would only possibly have five more years with this child is heartbreaking.

In the beginning, I just never wanted him to leave the house.  If he did not get a cold, he would live.  Of course Jack, as soon as he was mobile fled the house.  Anything with wheels would do, his sister's doll carriage, the baby was tossed out, his red plastic car, he even took the keys to my car when he was three.

Fortunately, the Cystic Fibrosis foundation is a well run, well oiled machine.  The progress they have made is remarkable.  Mothers today are told very different things about the future for the children.  However, the future is still uncertain for all children with cystic fibrosis.  The care involved is tremendous. Daily chest pt, airasoles, medication is just part of it.  Many are unaware of the time and work it takes to keep a child with CF healthy.  Sometimes that ignorance can be hurtful.  

Jack, like other children with cystic fibrosis has had his share of hospital stays.  None of them easy.  His pancreatitis has been unforgiving.  I have watched this child endure hours of pain, needles tests and weeks without food.  This january I watched him suffer through a near fatal pick line infection.  The courage and resolve he has shown me, well I am blessed to be his mother.  He has taught me how to be compassionate, loving, forgiving and a fighter.  

So in may I am walking for my beautiful boy, his sister kate and every other child and mother and father in this fight.   Join me?

And a heartfelt thank you for reading my story.

This is for you My Beautiful Boy:  http://www.youtube.com/watch?v=aePWkeDxRjE

Tuesday, April 5, 2011

Margaritas and the DesBerardos for a Cure

It has been a decade since my youngest children, jack on the right and kate on the left were diagnosed with Cystic Fibrosis.  Its been a decade...  At the time I wanted nothing more than a glimpse into our future, to see what it held.  I now know that would not have been a good thing.

Jack has struggled with his Cystic Fibrosis, and have told his story here.  I never would have guessed that having a sick child would be so difficult.  Emotionally watching Jack endure what he has physically has been heartbreaking.  He is my little boy.  At four he wore his bumble bee stripped rubber boots every day for a year.  He liked anything with wheels. He was always in motion.  After he was diagnosed I used to rock him to sleep and whisper in his ear  "Stay with me Jack, Stay with momma, do not leave me Jack".

This year when Jack was hospitalized with a near fatal pic line infection, I found myself saying the same thing to him.

What I know now, his life will be a struggle.  A cure?  Well that will only come with the kindness of others.  You see the only way to get medical research done is to raise money.  Corporate funding is non existent for Children's disease, for one simple reason,  they do not grow up to be the CEO of coke.  They die.

I am hosting a party, inviting friends and family and my favorite band is going to play.  Not only to raise money but to thank everyone for the love and support Jack and I received this year.

I do not know what the future holds for Jack.  That is something his doctors say to me all the time.  Its uncertain.  I am certain of one thing.  I have hope.  My hope is you.

Wednesday, March 23, 2011

There Will Be An Answer Jack

For my brother David there was no answer.

In a few short weeks it will be two years since my brother David died.  No he did not have CF, he had a different chronic disease.  David was an alcoholic.  For years, it went undetected.  Yes he drank pretty heavily in college and in fact came home with a broken jaw because he fell of a balcony.  We just thought, hmm one too many buddy.  He graduated and followed my brother to California, started what looked like a promising career.  But there were cracks, cracks my older brother noticed in David.  First DUI, and a trip to boot camp (prison).  Then the rehabs started.  Well you know how the story ends.  I got a call and the next thing I knew I was on flight.  On a flight to help my other brother and sister put an end to David's struggle. It splintered my family.

Not a day goes by that I do not miss him.  After all he was me.  He looked just like me (we make a better looking boy), he was smaller and sensitive.  He had a wonderful sense of humor.  No matter what was happening in my life, he could always make me laugh.  My children adored him.  I remember being really frustrated with the school and I called David to complain that it seemed I was always required to be there.  I asked if he ever remembered mom being at our school.  He said "Liz we took the bus, I do not even think Mom knew where the school was."

We fought hard for David and fell short, really short.  Sometimes I wonder if anything is really being done for addicts.  Is their research?  Who is raising money?  I know I have never been to A Walk for the Cure of Addiction.  Is Dr. Drew it?

What I do know how tragic being there was, shutting down those machines, watching him struggle for that last breath and then falling silent.  Having to turn and walk out the door and leave my  baby brother behind.  So much harder than I ever imagined.  Not a day goes by that I do not think about this.

I think that made this past hospitalization with Jack so much harder.  All of the sudden the realization that I might really have to hold him, watch him slip away and walk out the door.  I came completely undone. I fell apart.  I broke into so many little pieces.  Some are more aware of this than others.

I am picking up the pieces.  Putting our lives back together and getting back to what I used to do very well.  Raising money for a cure, a cure for CF, because I can not do that again, walk out without my baby boy.  No one should have to walk out that door without their sister, brother, son or daughter.

I am thinking its time to throw one of my legendary cocktail parties with a little help from my friends.  Details to follow.

Go to walks, cocktail parties, casino nights, make a difference, with your help someone will get to leave with their baby in tow.  What a gift that is.

Thursday, March 10, 2011

I Am Back...

I took a much needed break from my blog.  Once Jack gets back to school, and the skatepark, I need to try and pick up all the pieces that his hospitalization left in its wake.

This time, mostly Kate needed me.  She needed to know that I was here and I loved her and that she mattered too.  For Kate, its simply showing up, American Idol, reading in bed at 9 and off to sleep, knowing I was there sleeping too.  Not even downstairs.  I have never gotten so much sleep in my life.

Having a child with a terminal disease will often shatter everything you knew.  Where once life was safe, your biggest concern, getting them signed up for summer camp.  Now, nothing is safe.  Within a minute, without any notice your life will unravel.

My marriage unraveled the first time Jack was hospitalized for more than a week.  Now it was very unstable to start with.  Since it was so fragile, there was no way it was going to survive this.  I remember Jack had been in the hospital for weeks with Pancreatitis.  Something children do not get.  Finally they did an exploratory surgery.  We waited and waited.  The surgeon, a specialist, came out and informed me and my husband that "he had never seen this in a child before".   That Jack had chronic pancreatitis,  meaning he had many episodes before this.  His pancreas was deformed and he had no idea what the future held.

Then we went to recovery.  Jack was crying and in so much pain.  His father left.  And I understand why.  Of course he needed a minute to take this in.  I stayed with Jack got him back to his room settled in and when his father returned went home to take care of my girls.  They were finally asleep too and I was alone.  The phone rang.  It was my husband calling me from the hospital to tell me he wanted a divorce.

He had left so many times.  He had left on street corners in Manhattan with no money and no way to get home.  He had left me at parties, fund raisers and at home.  So why did this come as such a shock?  I knew that night, as I sat there in tears, that he had left me for the last time.  I could not do this anymore.

I had to take care of my son,  I had to make sure the girls were ok.  I could no longer take care of his fragile state.  His insecurity.  His need to feel loved by my asking my asking him to stay.  It was over.

Once again, during past hospitalization, it was business as usual.  When Jack was in for the life threatening infection, his father needed to take his new girlfriend on a ski vacation.  And he did.

I love my son, and I love my girls so its difficult for me to understand that some people have different coping skills.

I had my ski vacation, with my beautiful boy and my daughter.  We had sun, we had snow and we played epic games of Monopoly (Jack won every game).

Do not misunderstand what I am saying.  I do not blame Jack's illness for the end of my marriage, it just helped me realize that I did not have one.

I love my children.  I love my son.  So I do not regret getting married.  And I thank him.  I am free now.

Thursday, February 10, 2011

As a mother who can not imagine live without her beautiful boy .. thank you.

Is this the light at the end of the tunnel?

A photo shoot of Jack.  This morning I decided that I would love Cathrine White to photograph Jack.  For the first time in a long time he has no IV, no Picc line and no tube running down his nose.  He does have his signature head of hair and gorgeous smile.  For now.

Jack headed off to school first thing in the morning and I did not hear from him till 7 pm.  What I know about Jack, through all of this, weeks in the hospital, painful pancreatic attacks, IVs. Picc Lines and most recently his near fatal blood infection, when Jack feels well .. he lives life well.

I remember being at a memorial for a friend who went to work at his new job at canter fitzgerald and never came home.  His wife and my friend got up and gave a very moving speech.  She said "Ward lived life well".  Everyone who new him, and he had no shortage of friends would agree with that.

I see that in my son jack and its a lesson to me.  Live life well.  Live it today.  Without any warning you might find yourself at a babies hospital at your child's bedside, waiting. So you see while so many have told me that Jack is fortunate to have me, the truth is I am fortunate to be his mother.  He his taught me more about living life. 

For anyone who says, God only gives you what you can bear, I do not agree, who can bear this?  I know I can not.  I do not handle it well, I fall apart, I cry and live in fear of what may happen.  And for those who say that he will be in a better place.  Well that is not true, what better place is there than here with me and his sisters.  

So for today, I am going take a page from Jack and live life well.

Wednesday, February 9, 2011

Not Another Trip to the ER at Columbia!

I am beginning to feel like I am a frequent flyer.  Quite honestly, I would rather have that status anywhere but here.

Jack has an NG tube.  I feed him through it.  Which means mixing powder like baby formula.  I am very unfamiliar to this as I breast fed all three of my children exclusively.  Monday night the tube became clogged.  The clouds rolled in.  Emotionally and physically exhausted, I thought I will not make it through another trip to the ER.  I called Jack's dad.  He said he was traveling.  He is always conveniently out of town.  Two weeks ago, the time I spent five days straight at Columbia, his dad was unable to come because he had to take the key to our house in Vermont to the realtor.  I later found out he took his new girlfriend on a ski vacation.  In December he was on the west coast with his new girlfriend.

So yesterday morning I packed Jack and went back to the ER.  Determined to get out in record time I bullied my way through.  Business as usual the ER was filled with kids from the area whose parents refused to get a primary doctor with fevers of 98.  Hardly something that should bring you to one of the top teaching hospitals in the country's ER.

This trip had a happy ending.  They decided to pull Jack's NG tube and let him try a low fat diet.  Jack and I were giddy on the car ride home.  Jack no longer has a tube running down to his nose.  He does not need to be fed every three hours through the night.  I actually got to have a night out.

He put on his back pack and for the first time in a month headed out the door to school  As I write this I find myself wondering how his day is going, sitting next to the phone waiting for a call.  So far so good...

My baby boy is out of the hospital, without a pic line or an NG tube.  All is right with the world, for now.

Sunday, February 6, 2011


Two weeks ago, I left the house and told my girls I would be back in two hours.  I was just taking Jack to Columbia, he had a fever and we needed to culture his line.  The girls did not see me for four days, when I stopped in for a change of clothes.  Note to self, parenting is not that hard, just show up.   I chose Jack.  I know most would say I had no choice.  But I did.  I chose Jack. Others will say I made the right choice.  Did I?  Only time will tell.

Sam, my first, and I have been together for fifteen years.  From the start she let me know who was in charge.  I purchased this gorgeous stroller and waited for her arrival.  She came alright, all 8 lbs and 22 inches, but when I put her in the stroller she screamed.  She was in the baby bjorn from that day on.  She started swimming at six.  Seven years later, I have bags of ribbons, many miles on my car and she has trophies, articles and a thirty year old record that she broke.   Recently Sam has been rethinking swimming. This last month, the month when I chose Jack, Sam needed me.  She acted out the Saturday night I was gone and her father said she was taking advantage of Jack being sick.  I knew better.  She needed me, I was not there, I let her down.

Today Sam embarked on her latest thing.... I found this wonderful talented photographer, Catherine White. She agreed to shoot Sam.  The pictures she took brought me to tears.  Here are just a couple

Thursday, February 3, 2011

The Good, The Bad and the Ugly

Our trip to Morgan Stanley's Babies Hospital

Jack and his dad.. Who is the patient?

The Good

Jack's results.  His platelets back to normal, cbc normal, and enzymes normal.  The life threatening infection that was racing through his blood,  suppressing his white count causing him to be septic was gone.  

The enzymes being normal, his pancreas is settling down.  He still has his tube in his nose and we are still waiting and resting his pancreas.  Either we are seeing the light at the end of the tunnel or its the lights on the train coming in the other direction, never sure.

The bad.  

I called Jack's home health care supplier today, I am out of the formula I put in the bag attached to the tube that goes down his nose and feeds my son.  It seems that our insurance will cover the tubing and empty bags but not the food that goes in it.  Excuse me?  WTF.  Car insurance is so much more effective than medical.  We pay our medical insurance religiously.  When it comes time to pay, no they seem to have a hard time letting go.  You know to pay for life saving surgery, medicine, tests, all the things that will give my child a fighting chance against this disease.  Honestly, jail.  

The Ugly

Insurance executive who refuse to pay out for surgery, supplies, tests etc.  Either jail or a two week stay at Columbia Pres. I read an article today that if you are treated at a hospital that is more aggressive in their care you have a far better chance of surviving.  The only reason hospitals are not aggressive, they do not want to risk not being paid by the insurance company.  That is heartbreaking..

I left Morgan Stanley's Babies Hospital today, Jack in tow,  and took a picture.. the doors.

Jack waiting to go home...

Tuesday, February 1, 2011


To my beautiful daughter,

I am so sorry that I have let you down, that I have left you on your own and during the past two months when you have needed me the most.  I have not been here.  But know how much I love you and how very proud of you I am.  As a baby I never put you down.  You soared at an early age.  You were beautiful, bright and fearless.  Yes, you are an excellent student, beautiful and a wonderful friend.

Of course I want you to continue to swim.  Since six we have traveled the east coast to your meets, we have gotten lost too many times to count, stayed in beautiful hotels, stayed in hotels where we feared for our lives walking out the door.  I have admired the hard work and commitment along with you talent that brought us to huge meets in NC, Boston, FL and LI...  Every time you swim, I am so proud of you.

Know I love you with all of my heart Sam and I am home.. and all yours.. NC in April?

Your mother...

Its a long road home...

While in his heart Jack is so excited to get back to his life, his friends, his school.  So far he has been unable to muster up the courage to walk through the doors of Rye Middle School with a tube down his nose, taped to his face and his back.  I walked through those halls today.  Is every preteen in this school tall and stunning.  Middle school was really hard for me and I was just short with bad hair.

Today I met with his guidance counselor and nurse.  First of I have never talked about the community we live in and the School he attends.  It brings me to tears.  To all of you how have reached out to me and my family.. thank you and we would not be doing this well without you.  To the Middle School staff, thank you for all of your help and guidance with Jack.

To my beautiful boy, I am going to bring you to school and you are going to walk through those doors and your friends will walk with you...

sleep tight my beautiful boy.

Monday, January 31, 2011


Jack's sister Kate followed her brother Jack by 13 months.  She too was diagnosed with CF.  Sam turned 3 a month after Kate arrived.  Fortunately Sam was big and mature for her age so I put her to work immediately.  She was in charge of grabbing blankets, passys and books.  Often while  I was preoccupied with the babies, Sam would march over to Marsha's house.  Usually dressed in only a diaper.  Marsha, from the midwest had one daughter who had a better clothes than me.  So Sam a the door in only her diaper.. well..   I had other things to worry about.

Two children with CF can be a rough in that children with CF get each other sick.  But the bond they shared from the start has proved pricelss.  I often dressed them in matching outfits from Best and Co.  They ate at the same time, slept at the same time, played at the same time and took a bath at the same time.  Note To Self: one of my all time favorite Jack stories... once, after Jack and Kate had been bathing together for years.. they popped out of the tub and ran around naked.  Jack stopped in his tracks.. looked at kate and asked "Kate where is your Penis?"  Kate, the younger of the two looked at him like he was a complete idiot and walked away....

That bond has served them well.  When Jack goes to the hospital, so does Kate.  She plays games with him, or quietly reads if he is sleeping, we have watched all the Pirates of the C movies, the Bourne movies and endless episodes of the Simpsons.

This past stay at Morgan Stanley we took up the game of Life.  Kate continued to play even after Jack when forced to get a wife made her ride in the trunk of the car.  Sued her ten times for 10,000 each time. And with millions in cash, purchased a double wide for his wife, saying he only did it because he was forced to buy a home,  otherwise he would have left her in the trunk.  Needless to say he won every game.  Which says a lot about our culture...

Kate is Jack's companion...


Before having a sick child, I naively believed if there was a disease, there were teams of doctors working tirelessly to cure it.  I did not think about funding, but why would the government not pay for cures.  I could not have been more wrong.  The truth is its you and me and my friends and friends of friends that are left with the responsibility of finding a cure.

If your child is fortunate enough to have a disease which many others have, chances are there is a lot of funding for it and a lot of progress being made.  While CF does not effect a large amount of children, the organization and there is one, is very well run.   The overhead, 95% of the money they raise goes towards the disease, I have seen their offices and would have put it at 98%.. this is an good thing.

Others are not so fortunate as we are.  Their children have diseases that are rare.  Rare means, not many people raising money. No money no cure.  What makes it even more unfair is that the government makes the process for finding a cure very very expensive.  A great deal of money at the CF foundation is put toward getting medicine approved, through a very difficult and expensive government buearacracy.

First thank, thank you to all of you who donate.  If you have friend with a child with illness, make donation to that particular disease.  Attend fundraisers for childrens diseases and hospitals, they raise money you have fun and bid on trip or a spa day and go, everyone is happy.

I do not even want to talk about insurance companies, except to say our children get healthy or stay healty in spite of insurance companies.  Shouldn't it be the other way around?

So thank to all of my friends and friends of friends, who have walked in the rain, danced in a club, listened to endless speeches,  met the mets in order that we can find a cure for CF... your efforts working they are getting closer to a cure and have given children with CF a chance at a longer more productive life..

Thank you one and all....

Sunday, January 30, 2011

Cystic Fibrosis

When Jack was first diagnosed with Cystic Fibrosis I called his lung doctor daily with questions and cures I had found on the net.  Silly to think she had just overlooked them.  Finally, Dr. Quittell said "Liz go home and live your life, I will call when there is a cure."   So thats what I did, I went home and took care of my babies.  I had three in three years.  Sam, my first was big and beautiful and bright, 20 months later she had a brother.. I still think there are days she has not forgiven as she truly enjoyed her Only Child status.

Jack came into the house like a lightening rod.  He was a ball of energy from the start, and his sister Kate followed thirteen months after.  I went home to take care of my babies and wait for that call.

In the years that followed I have been pretty good at doing just that.. when Jack gets sick, my world stops and I get scared.  When he was a baby, I would just hold him and rock a him and whisper in his ear "do not leave, stay with mommy Jack.. do not leave me."  I still kiss him goodnight, when he is sick and say Jack stay with me.

I am here, taking care of my babies and waiting for that call.

No Dinner for Jack

The only cure for Pancreatitis is no food and no drinking.  During an attack the Pancreas becomes inflamed and attacks itself.  The only solution.. bed rest.   Jack's last meal was December 1st.

He is allowed clears.. its the nursing home diet, applesauce, chicken broth, apple juice.  And slowly you introduce more food back in. So tonight, I am cooking for Jack.  I am making chicken noodle soup from scratch.  Sadly I will have to strain the past part out before giving it to him.. but it feels so good to be able to cook for him.

Last Night....

First off, in the middle of the day Jack decided he was staying with me for the weekend rather than go with his dad. then he started to put on his snow pants.  I looked in horror and said "Jack, what are you doing??"  Thats when he told me about his sledding plan.  To which I said.. "Jack what you are thinking.. you might get hurt".  Jack just had this look on his face (when your kid looks at you like you just said the stupidest thing they had ever heard).  He followed the look with "and.. your point?"

What was my point?  What more could possibly happen to him.  After all he had been through.  It was my fear, my wanting him to stay.. stay with me.. home where he was safe.  But is he?  He got pancreatitis home with me.  His got a near fatal line infection home with me.  Off he went.. when he came home I greeted him at the door as if he had been gone for a decade.. and settled him in.

Later that night, after reading an email that made me cry, I decided to have a heart to heart with Jack.  Where exactly I was going with this.. the emotionally crippled giving life advice? Off I went determined to make sure he was alright with all we had been through.

Jack was the one who saved me last night.   Jack said "ya know mom, its been three years since my last pancreatitis attack and I am out of the hospital, no more picc line and this tube in my nose is ok.  I am ok."  He went to tell me he felt lucky.  And further discussed his plans for more sledding tomorrow.

Why is it so hard for me to move on?

Saturday, January 29, 2011

Jack's friend Sam

Sam and Jack met at the skatepark and became fast friends.  When Jack got hospitalized in December, he was at Morgan Stanley for almost three weeks.  Unknown to me, one week in, Jack posted on Facebook that he had been in the hospital for one week and one day and still no visitors.  Sam, new to Westchester asked his mother to bring him.  His mother is new to the US and the area, yet she put Sam in her Car, put Columbia Pres in her nav system and brought Sam to Washington Heights (Harlem)  to visit Jack.  Love that.

Last night, Jack struggling to be back to normal, begged to go Sam's house.  At nine he wanted a sleepover.  For most boys that requires a phone call.  Jack has tube in his nose and pack on his back and mother that has a hard time letting go.  But 9 pm, friend in tow, I went to Sam's filled Jack's bag and kissed him goodnight.

I just could not sleep.  And at four am, my phone rang.  I picked up on the first ring.  It was Jack and he was in tears.  I went to get him.  I guess without the pole the bag kept clogging and the alarm kept going off.  Jack, who is never in tears, said "I am never going to able to have sleep over, and I am sorry you had to pick me up at this hour."  Now I was crying, but I brushed the tears from his cheek and told him I loved him.  I also said I admired his courage and would figure this sleepover thing out.

Now I am tired and teary eyed.  He never cries.  Never ..four weeks in the hospital excruciating pain, needles, endless stays in the ER.  He never cries.. so this made me cry.

While I would prefer to have him ten feet away from me at all times.. I know now I have to learn to let go and let him find his way back to being normal.

Friday, January 28, 2011

Back to school

This morning jack wants to go back to school.  And while I so admire his courage, I am afraid.  He has a tube that runs down his nose, is taped across his check and the the tubing goes into a back pack.  The back pack contains a pump and a bag full of "food" for Jack.  His friends have embraced him.  They have come by in a pack to hang out with Jack.  But now he is off the the halls of middle school.  I know everyone will not be as kind, and for me this is heartbreaking.

I have told his sister sam to look after Jack.  The cruelest part about having a chronic illness is that along with the pain and hospitalization, there comes this....

I wish I could go with him.  Stand next to him.  Look after him.  After spend weeks in the hospital with him, it is so hard to let him go.....

Thursday, January 27, 2011

Jack's Sisters..

Jack is surrounded by woman in my house. I am a single mother.  Jack has an older sister Sam.  She is fifteen going on 35.  When Sam was two my father said "tilly (that was my nic name) samantha is beautiful, smart, athletic and fearless, she is nothing like you."   Thanks dad... maybe thats why I have had boy issues.. but thats another blog.   Sam is outgoing, she has been a competitive swimmer since the age of 6, an excellent student and a very pretty girl.  She is a handful and does not cut Jack any breaks.  Jack's younger sister Kate is a lamb.  She is built like her dad, lean.  She always has her head in a book and loves the theatre.  We love the theatre, the ballet and the nutcracker.

One of the hardest things about having a child in the hospital, when you are with the child in the hospital you feel like the girls need you and when with the girls I feel like Jack needs me.

Home, I spend the first few days picking up the pieces of my family.  I know the girls are sympathetic towards Jack.  But they let me know in no uncertain terms that they do not like being left on their own.  And I do not blame them.


And trying to figure out a new normal.  Jack has a tube down his nose and a bag in a pack pack.   I was up every three hours last night.. fear i was not doing it right, fear it was clogged, fear that it was empty.  Its like having a newborn.. and I am exhausted.  Happily exhausted as he is home.

He woke up demanding a bowl of corn flakes.. um no jack.  He is allowed clears... i started my day with starbucks and a donut (before Jack woke up).  He will start to gain weight with this NG tube but to date we have lost a combined total of 15 pounds.  I am wearing belts with my skinny jeans.

We will figure this out.. for now my beautiful boy is home and yes when the snow clears he gets to go to the skate park. tomorrow school, with a backpack and a tube down his nose that leads to a backpack that carries a pack with a creamy substance that looks kind of like formula.

Wednesday, January 26, 2011


Tonight at 5:45 pm, I walked out the door of Morgan Stanley Children's Hospital with my beautiful boy in tow.

Before leaving Jack talked about the boy who would take his place.   Jack said "he will be so excited after spending days in the ER to be in this room".  To his mother, I wish you good speed, I wish your baby a short stay, not too many needles and peace.  And like me,  with all my heart I hope you leave with your beautiful boy in tow ....

All my cubs are home, and I am a very fortunate girl.  Jack's story is far from over, he has a tube down his nose and we have a long road ahead of us.   I will continue this journey on this blog...

Thank you for listening and being part of Jack's story....

To all of those mothers, with babies still in the hospital, and all those mothers whose fight is over... my heart is with you tonight...



More waiting.

Jack is still at Columbia... we are waiting... waiting for the insurance company to organize the home healthcare.  Jack is coming home with NG tube.  It goes down his nose, through his stomach and into the bowel.  We are opting for this to avoid another life threatening infection.

While the NG tube does not have the same risk of infection, it is less hard to hide.  Early on concerns about how Jack would handle going to school with a tube running down his nose.  Well apparently Jack posted on his FB page last night.. "yeah .. I have this tube in my nose".  I do love that child.

I am a lucky girl, he will hopefully be home tomorrow back with me and the girls... where he belongs.

Tuesday, January 25, 2011

Walking out the doors of Columbia

Every time I leave Children's hospital, ever time I walk through those doors, I think about having to walk out without Jack.  And I always say.. there no way I could do that, leave without him.

Tonight I was supposed to leave and to take care of my girls.  Jack's dad called and said.. I am not leaving my apartment till you leave.  I told "I will leave but hurry because he so sad"... his dad said every time you say that I get there and he is whistling.  I think its me.  I can not leave him.  And coming home, when he is here.. there is a huge whole here.  I need him...  So to all of you mothers who have to leave without your babies.. I know how that feels.  And I am so very sorry.   xxx,

My Beautiful Boy

Jack was blessed with a great head of hair.  Its blonde and thick and has the perfect wave.  He has had it from the start.  During his stay, many resident, attendings, docs and nurses have asked me about Her.  When I correct them and say Him.  They stare and say "he is beautiful".   And he is, green eyes, freckles and a big mop of hair...

When Jack was diagnosed with CF I made a promise to myself.  I wanted Jack to be known as Jack who by the way has CF.  Not the kid with CF .. Jack.   And for the most that has been the case.   So I want to talk about Jack.  Jack is a ball of energy, he has been from the start.  Surrounded by woman, he has always been all boy.. cars, trains, anything with wheels.  Early on the house was quiet, finally I went outside and there was Jack, he had taken the keys to the car off the rack, jumped into the car and started it, his younger sister Kate was riding shot gun, and he was trying to work the pedals.  he was four.

I love his spirit and his drive and determination... I love that the first question he had about getting a tube shoved down his nose as a way to feed him.. "can I go to the Skate Park".  I love my beautiful boy.

Waiting ...

I brought Jack to the hospital a week ago today.  We were in Emergency and right away they did a blood test and found that Jack had a blood infection, so serious that his white count was way off, and his plattltes were effected.  Then we started waiting..

The truth is, Jack's infection was so bad they had him hooked up to every monitor available.  It was life threatening.  And then we started the waiting game.  Waiting for test results, waiting to decide what to do, waiting to get an IV, waiting to get medicine, waiting for a room, waiting for more tests, and again based on those results waiting to decide what to do and then waiting for them to do it.

While you are waiting for an answer that never seems to come, you are left alone with your thoughts.  For all of you who have posted on my wall, inboxed me and sent there good wishes, thoughts prayers and positive energy .. thank you!  It means everything to me.

Waiting for a bed..

I have complained to anyone who would listen about our wait in the ER.. 40 hours this last time.  The truth, I feel terrible about that.. beds become available when children get discharged.. but beds also become available when I child loses his fight..

A Brief History

When Jack was a baby he seemed to have one horrible cold after the next.  After being told that I was over reacting by Dr. Brown, I took Jack to Dr. Cindy Hartz.  She immediately sent me to Columbia with Jack.  After a day of tests, it was determined that Jack had a collapsed lung, double ear infection, one had perferated and an eye infection.  Dr.  Lynne Quittell sent us home.  She asked me to bring him back for one more test.  A Sweat test given to determine if your child has Cystic Fibrosis.  She told me not to read about it on the internet, she did not think he had it.  Being the good catholic girl I am, I listened.  So when test came back positive and I was sitting in her office and she said.. "many kids live to their 18th birthday'.  I was heartbroken...  I had no idea it was fatal.

Now in the past decade, because of a wonderful organization so much progress has been made with Cystic Fibrosis.  Jack's main struggle has been his Pancreas.  This all started when Jack was six.  Suffering from what seemed to be a horrible stomach ache and told he probably just had gas by a local doctor, we took Jack to Columbia.  He had Pancreatitis.  Usually Alcoholics get this, as the consumption of too much alcohol leads to blockage and Pancreatitis.  We are not sure what causes Jacks.

After weeks in the hospital, many IVs, we could not get a handle on it.  Dr. Chabot a friend and neighbor is head of surgery at Columbia, his collegue Dr. Stevens did a surgery on Jack.  When he came he told me that he had never seen this in a child.  Jack had lots of damage to his pancreas because he had many episodes of pancreatitis.  I got jack settled into his room, back to the girls and burst into tears..

It took weeks and a provac port to get Jack home and we started down this path trying to figure out Jack's pancreas.   Through it all Jack has shown so much courage and hope and a love for life.  I admire him more than anyone I have ever met.  I have learned from Jack that this life is a gift and to live it.

So if you take away anything from this blog, make your life count, hold your children close but let them live.

Back track....

Jack spent three weeks in December at Columbia.. this is when he suffered his fifth attack of pancreatitis.  It had been three years, and in the beginning we were hopeful it would resolve itself with a few days rest.  That is not what happened, on the day he thought he was going home, his blood results came back, his numbers were up he would have to stay and have surgery and a picc line.  The picc line I tried so desperately to avoid because it gets infected. And if it does, it is life threatening.. and that is exactly what happened.

With Jack home days before Christmas, picc line in, Kate and I went to see Rain on Broadway.  When they played let it be.. i thought about Jack and all we had been through.. Jack .. "there will be an answer"..

Monday, January 24, 2011

And finally tonight.. to my honey bunny Jack...

Guess how much I love you?  I love you to the moon and back.  Stay Jack.  Stay with me.

A Heartfelt Thank You....

It takes a Village to raise a child.  And in Jack's case nothing could be more true.  I truly appreciate and cherish all the love and support I have received.  From posts and inbox messages, calls and offers from everything from an apartment in the city if I needed a rest or a shower, to help with my girls.

What I have learned is that I am blessed with three beautiful children and kind and generous friends.  Thank you,  all of you and know how much I appreciate your love and support...


This is the infection Jack had...


He seems to be reacting positively to the antibiotics thank fully.  We have decided not to with another Picc but have inserted a NG tube that goes through his nose.  Right now Jack is very uncomfortable and threatening to pull it out.....

Tomorrow can only be a better day....

home with my girls

But my heart is with Jack.  He has his NG tube.. but he hates it.  He tried to pull it out. He has called me no fewer than 20 times.  If I go to the hospital and I see him in tears I will pull it out for him.  His father is with him and trying to encourage him to give it time.

I keep waiting for a break, for a sign, for something....

I love you Jack.. with all my heart.. just stay with me..

Life in a Babies Hospital

Most do not know what it is like, and with all my heart I hope they never do.  Its a lot of sitting around and waiting.. waiting to find out if your child is going to live or die, waiting for tests, waiting for test results, waiting for doctors to make round for the two minutes they are going to tell you where you are.

Its hard to leave your child because often they need, they need you to find the doc because their line has blown, they need you because they are getting sick, they need help getting to the bathroom, they need to know they are not alone.

When finally they fall asleep you are left with just you and your fears. Some eat, some drink,  I am choosing to keep this journal.

Sunday Morning At Columbia

After staying up until midnight waiting for them to bring Jack for his MRI, we finally fell asleep only to woken up at 7 am Sunday morning.  We were on our way to Milstein finally for Jack's MRI.  Jack has a hard time with IVs.  Getting the one currently in place, took many attempts and from the start it burned.  The MRI required Jack to lay still in the machine for half an hour, while contrast was injected through his IV.  The contrast caused an intense burning sensation, I watched as tears ran down his face, but he held still and got through it.  The MRI guy loved Jack and said he was better than most his adults.

Once back in the room it was obvious his IV was blown.  His hand was swelled to twice its size and he needed another IV.  Charlene from the IV team came and Jack held out his other arm for yet another IV.  Later in the day a resdent came to insert a NG tube through Jack's nose that would go into his bowl.  I asked repeatedly how often she had done it.  She did not want to answer.  She got the tube in but was unable to take the "guide out"  making it extremely painful for jack.  Tears streaming down his face, and begging them to take it out .. finally they did.  The resident finally copped to never having done it before.

So now we are waiting for someone with experience to try.  Nothing ever comes easy for Jack.  But he held his own and watched "man against the wild" on his iPad.  We laughed about how his sister sam would fair "out in the wild".  We both agreed she was too much of a diva to do it.  However, Kate my youngest, said "if a film crew was following her she might give it a try".    We all laughed...

Today jack is on day five of IV antibiotics to clear up this life threatening infection.  He needs seven in total.  And we are waiting for the results of the MRI and another attempt at the NG Tube.

Some say Jack is lucky to have me.  Its the other way around, Jack has shown me courage and a passion for life that I have never seen in anyone before.   xxx Jack.

January 2011

The past post is from today.  I am spanking new and do not know how to change the date.  This morning Jack is going to get a tube that will be inserted down his nose, through his stomach to his colin.  This will allow us to give him the nutrients he so desperately needs.  Prior to this Jack had a picc line.  Every night I would prepare a bag and feed him through that line.  However, Jack developed  life threatening infection and the picc line had to be removed.

This was after a 48 hour stay at Columbia's ER.  Because of the lack of available health care to the uninsured and the poor, these families have no choice but to go to their local ER.  Columbia Pres. is one of the top Hospitals in the country.  However it is located in Washington heights.  During our 48 hour stay, jack slept mostly.  I sat in chair with the following companions..  a 15 year old girl, clearly a gang member, holding her hand with huge puncture wounds.  She had been bitten.  No not by a dog, by another 15 year old girl.  There were three of four teens who had overdosed.  Two 17 year old boys, clearly felons, under 24 hour police watch and numerous screaming babies with pnemonia.  Ten different doctors came in to talk to me about Jacks infection, they had ten different recommendations on how best to treat.  John, my nurse who has seen me through many of Jack's struggles once told me  when I complained that no one seemed to have an answer to Jack. "Liz thats why they call it practicing medicine."