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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

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Hope

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?

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7447&idUser=459007

And a heartfelt thank you for reading my story.

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

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.

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.

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.