Monday, February 4, 2013

Anything Can Happen.  Its better now.  Jack has been home for one month.  The girls have gone on with their lives.  Jack has gone with his life. They are good that, they live life and they live it well.  Finally, I am going on with mine.   I remember when Jack was diagnosed.  When, five months pregnant, I was told Jack had Cystic Fibrosis.  It hurt to breathe.  I used to hold him at night and rock him to sleep and whisper in his ear, "don't leave me Jack, stay with mommy."  

One month later, I found out the baby girl I was carrying had Cystic Fibrosis too.    Not knowing what the future held terrified me.  I wanted to see, I wanted just a snapshot.  I wanted to know.   I read everything I could on the internet, drove our doctor mad with phone calls. Finally, Dr. Quittell told me to stop calling, she would call me.  So I waited, I waited for her call.  I waited for her to tell me everything was going to be ok.   And finally settled into life with three children under three. 

Throughout this journey, I have held it together.  We ski, some years logging 40 days on our skis, travel to warm destinations, California to Atlantis.  Kate and I have seen everything on broadway , all our favorite museums and many exhibits.  She is my city girl.  Sam and I traveled the east coast, Sam is a talented a competitive swimmer.  I have tried to attend Jack's skateboarding competitions.  I am currently banned from the skatepark.  Apparently, it's frowned upon to run into the skate park, yelling honey are you ok? when your son falls off his board.   I have cooked, thrown birthday parties, chased them, bathed them, hugged them and loved them.  I have lived life as if everything was okay.

I do this successfully when Jack is not in the hospital.  When he is, it all comes back.  The fear, the loneliness, desperation, the panic.  The nights where I sleep on the chair next to his bed and whisper into his ear, "do not leave me Jack, stay with mommy, don't go".  When he was little I worried he would be scared and he would need with me.  Now I worry about me, I do not know how to live my life without him.

Sam and Kate are Jack's sisters.  They love their brother, the protect him and look out for him.  Some wonder why I never mention Kate in my blog.  Kate has my heart.  She is sweet and smart and sensitive.  Kate has never been sick.  Not one day.  Never.  She is Jack's foundation.  When he was little she came to the hospital and watched endless movies with Jack.  Mostly Pirates of the Carribbean.  She played video games with him.  She stayed over.  

I am not sure what the future will hold.  I know this past stay was the best yet.  Maybe Jack is handling his pancreatitis better, maybe this is our future.  Maybe everything will be ok.

Sam is leaving for Bucknell in the fall.  Life without her, well I am going to miss her with all my heart.  She is blessing, smart, athletic, beautiful.  I have needed her, I have needed her to help me keep this family together.  I know I have to let her go now.  I am not ready to do that.

While this hospitalization was the shortest, for me emotionally it was the hardest.  I do not know why.  Maybe because my father died a few months earlier.  Maybe because I know Sam is leaving.  Maybe because it was the holidays.  Babies hospitals are notoriously lonely, but they particularly lonely during the holidays.  

With a little help from my friends, I am back. A little slimmer, a little wiser, a little more confident about Jack's future.  Taking a page from Jack, I am living life and living it well.  The past week has been the best I have had in months.  So thank you, for the cards, the dinners, the calls, the posts, the flowers, the book recommendations, the CD (loved that), the hugs, kisses and love.     

I am still waiting for my call from Dr. Quittell.  I know in my heart.  Anything can happen.