Wednesday, May 29, 2013

Living Life to the Fullest

This is Jack, and this is our story.  This year has been awful.  It started in Vermont, our family trip cut short after the first day.  Jack's pancreas in full distress.  With Jack's Cystic Fibrosis we can be caught so off guard.  There is warning, no signs, no symptoms.  I kiss him goodnight, and in the middle of the night, he is in agony and we are headed to the ER.  In the case, I had a four hour trip.  Without my oldest daughter Sam, I am not sure I would have made it.  She packed the car, refused to stay with friends insisting on coming home with me and Jack.  And when I started crying at the gas station talking to the attendant, Sam told me "Get yourself together".  I am so blessed to have three beautiful, strong and spirited children.

I always know when Jack has pancreatitis.  The nurses in the ER always question me, they think I am wrong.  They always ask "how do you know".  He gets a look.  I know that look so well.  He tries to hide it because he knows it means he is headed to the hospital for anywhere from two weeks to two months.  No food or water and excruciating pain until he gets his meds.  They give my son morphine.  He has been given morphine since he was six.  Mothers worry about giving their child asprin.  My son is on morphine.  But I know that look.

This winter, once his pancreas settled down and I though I was in the clear, more bad news.  Jack had a staph infection in his lungs.  One he will never get rid of.  I have feared this since I first read about having a child with Cystic Fibrosis.  This is your battle, keeping his lungs clear.  When he was a baby.  I thought I just will never let him leave the house.  I will keep him safe.  I will protect him.  Of course early on Jack showed me that was not going to be how he lived life.  He took off as soon as he was mobile.  And he has lived life to the fullest since.

He took the car keys when he was four and by the time I made it outside Jack had the motor running his sister, who idolized him,  was riding shotgun and he was playing with the pedals.  When I asked where they were headed.  He said "town".  I said "I do not think this a good idea".  Jack said " I do" and Kate agreed.  I was outnumbered.

There are great drugs now to help clear Jack's lungs and there have been great advances this year.  There is a drug now that stops the disease, Kalydeco.  My hope is it will be available in time to stop Jack's disease.  My prayer is that every child with this disease will be able to get this drug.

Twitter this weekend was a buzz with all kinds of news, it is my way to stay connected to the world.  Along with all the news from Hollywood and Washington, I read about a movie, a short film that Matthew Modine's son Boman is trying to get funded.  It is about a girl about Cystic Fibrosis trying to live life to the fullest.

Not much has been written about Cystic Fibrosis.  A film that will highlight the fight and the will and the strength of a child with the disease was great news to me.   The film is based on the youtube diary of girl named Eva.  Eva documented her fight with Cystic Fibrosis.

The film is important, because yes there have been great advances but children lose their fight everyday.  I think that most young adults and children I have met with Cystic Fibrosis do live life to its fullest.

I have always said, I wish with all my heart my children did not have Cystic Fibrosis, but they do.  As a result I am a very different parent.  I live in the moment and try to appreciate what each day brings.  I try to stay positive and not sweat the small stuff.  Years like this are challenging because I am so clearly reminded.  But Jack always seems to have a handle on this.  He says "I am okay mom".  And he is.

Please take a look at the following link.  The movie is titled Hyperion and everyone will benefit from seeing this film.  I hope it gets made.

Thank you to the Modine's for making this film...  For showing her fight, her strength, her living life to the fullest.

Monday, May 20, 2013

Our fight just got a little harder in the past five months.  Its hard for me to write about that.  Its hard for me to share that.  I have always been pretty good about living in the moment, not always thinking about Jack's Cystic Fibrosis.  But recently we got news that makes that so much harder.

As I write this, Jack is in bed with his pulmazine flowing out of his neb into his lungs.  We do this twice a day along with his vest.  This is an effort to clear his lungs, they are no longer clear.

My oldest Samantha is graduating in two weeks and off to Bucknell.  When Jack was first diagnosed I was told by my doctor "Liz so many children with Cystic Fibrosis are reaching college age and even going."  Saying good bye to Sam this fall is going to be one of the hardest things I have done.  And she is just going four hours away.  She is just going to College.

Honestly, I have always been able to share our fight.  I just can not do that right now.  Our fight is too hard for me to talk about.

May is Cystic Fibrosis awareness Month.  Below is a youtube from one of the more incredible people I have had the pleasure of meeting along this Journey.  She has Cystic Fibrosis.  So rather than talk about my journey, please follow watch her story.  She will inspire you.  She has inspired me.

This is our story:

Thank you for your continued support, love, emails, texts, thoughts, and prayers...