Tuesday, December 10, 2013


"All of my possessions for a moment in time."  Queen Elizabeth I

Sometimes I wish I could go back, go back in time, just for a day.  When they were little, life just seemed so carefree.  Yes Jack and Kate have Cystic Fibrosis, but to look them, you would never know it. When they were young, before Jack got really sick, we lived life, everyday like it was our last day.  Whatever they wanted or needed I gave them.  Christmas was heaven, parties with friends, Vermont, a dream.

Early on we took up going to Vermont the day after Christmas.   We had house with a huge fireplace and no TV or Internet of phone service.  Our days were spent skiing, our nights in front of the fire playing all kinds of ridiculous games.  I would trade anything  to go back.  Just for one night.  All three in their jams, exhausted after a day of skiing or snowboarding, in front of the fire.

Later, it seemed it was always around the holidays that our lives would be shattered when Jack, in the middle of the night, would get sick.  With little or no warning, we were on our to the hospital never knowing how long that stay would last.  How many nights would I sleep on chair, how many days away from my girls.  And Jack, how much pain before he just could not take it anymore, before his body said, enough is enough.

Last year I was really unsettled in December.  I just felt something was wrong, terrified something was going to happen, terrified Jack would get sick.  We made it through the holidays and there was a sigh of relief as we all spent the first day after Christmas in 22 inches of snow at Stratton.   But that night, in the middle of the night, Jack got sick.

His sisters, well I never give them the credit the deserve, they take care of Jack, they get him packed for the hospital,  they tell me to pull myself together.  They have lived this, with Jack getting sick, really sick, for their entire lives.  I never quite get used to it.  I still stand in the emergency room, with tears pouring down my face saying, "my son has pancreatitis and you need to get a line in him,  NOW."

And then I stay with Jack, some think I just wait... wait for them to fix him and send us home.  No, I explain his history, I demand his medication be given in a timely manor, I thoroughly go over his history and play an active role in every decision that is made and make sure costly mistakes are not made.  I sleep on a chair.  I rarely eat, Jack can not it just does not seem right.  Kate, my saint comes to visit and stay with Jack and Sam makes sure our family stays "Normal".  Which is all she ever wanted.

So it is that time of year.  My wish is to go back.  Just for one moment.  Back when I was not afraid.  Back when we were a normal family.  Just one day.

I live in fear of the holidays and this year is no exception...

But this year is different.    I know that whatever happens me and my girls will be able to take care of Jack.  We love him with all our heart.  He is our Christmas miracle.

Merry Christmas to all.....