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.

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.

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.

I CHOSE JACK

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