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.