Time

"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.....

FAITH

"Sometimes Life is going to hit you in the head with a brick.  Don't lose faith."  Steve Jobs

Often I have been given way too much credit when it comes to taking care of Jack.  One thing is for sure, Jack has always been the one to keep the faith.  Know matter what, Jack has faith that everything is going to be all right.

A little about Jack, as soon as he could walk he ran.  From the start Jack liked going fast.  He would jump on his bike and peel off toward town, which was fine expect he was four!  I told him no biking to town alone so the next day he took the keys and started the car.  He was going to drive to town.

His first day on skis, I went to find Winslow his instructor (a very cute aussie) and get Jack.  At the magic carpet they told me Jack was on the chairlift.  Really, I said this is his FIRST day on skis.  The calmly told me he wanted to go.  Of course he did, he would have gone on the Gondola and to double black if ya let him.  I told them, you have to say "No Jack"

But honestly there was no stopping Jack. If he was not peeling through the terrain park on his snowboard, he was flying through through the skatepark on his skateboard.  He liked speed, and he was fearless.

Once his father thought he would teach him a lesson and went off while snowboarding with Jack, thinking Jack would get scared and follow.. nope. That day I was skiing with a friend and on the board at the chairlift there was a note. Mrs Clark please come to the front desk.  I thought excellent, they found my car keys.  Wrong. When I got to the front desk, the lost and found, my six year old son was sitting on it  His father came in right after me. Deer in the headlights, he claimed they got separated.  I told him, you get separated from your 40 year old friend, you lose your six year old child.  But there was no stopping Jack.

At 6 Jack went to the hospital for what we thought would be two days, stupidly I told Jack he did not have to wash his hair till we got home, he left two months later with dreadlocks.  That hospitalization changed everything.   Jack was diagnosed with Pancreatitis, it was unrelenting.  His doctor was clueless when it came to handling it.  She thought a little rest and an IV.  She could not have been more wrong. Weeks later,  a dozen blown IVs, hours of pain and frustration, a massive weight loss Jack was not closer to getting better.  He was getting worse.  I called my friend from Rye, we lived around the corner and our kids were great friends.  Her brother in law was and is Head of Surgery at Columbia Pres.  He saved Jack's life.  He sent Dr. Stevens from the adult side.

Dr. Stevens did an ERCP.  They put Jack under and took a look.  I sat in that waiting room, confident he would come out and say, I have fixed your son.  Nope.  He came out and said "I have never seen this in a child.  I do not know what to tell you Mrs. Clark."  Tears streamed down my face and I went to Jack. He was crying and in so much pain.  It was devastating.  This disease is devastating.

Later that week, they decided to put a provac port in.  This would feed Jack, administer medication and require a lot of work.  Putting Jack under again was heartbreaking, he was so scared.  I was with him in the OR, I leaned down and quietly told him "Jack this is a magic port, with this port we get to go home Jack.  This is a great day".

He come home two days before christmas. His sisters who adore him were waiting at the door. They prepared a special dance for jack and hugged him till he could not take anymore.  Our friends decorated our house that year. Our house never looked more beautiful.  It was decorated with love and compassion.  We are blessed with wonderful friends. Jack's faith kicked in and he was snowboarding five days after.  Port wrapped, Jack took off.  Jack had enough faith for both of us.  He would say mom, I am good, I am okay.

I have lost count of how many times Jack has been hospitalized since.   After each hospital stay, usually picc line in his arm, as soon as he could, he would head off to the skatepark or terrain park.  His faith was remarkable.  Mine not so much.  I would breakdown, cry, drink wine, cry more, post on facebook, call anyone who would take my call. Which most of my friends did.  My friends were wonderful.  They drove my girls when I could not, they made meals when I could not.  They listened while cried. They helped me, I needed them because I did not have faith.  I was terrified.

This year Jack lost his faith. Jack, Sam and I were up at Stratton last Christmas. He was boarding in 22 inches of snow.  He stayed on his board till the lifts closed.  My legs were burning by 2.  That night his pancreas took over and we went back to westchester and back to the hospital.  This time was different.  That smile was gone.  He just was not coming back.  He was not okay.

I have to stay I am not all surprised.  I often thought, that everything this child has been through, the pain, the hospital stays, no food all of it had to be going somewhere.  I have often said his courage and faith were remarkable and it is.  This time there was no faith left.  I felt him slipping away, months went by.  I had no idea what to do. Finally,  I found help.  I realized it was my turn to be strong, to have faith.

I  have enough faith for both of us now.  I have to say its been months, but that smile is returning to Jack's face.  Jack, his sisters and I are going back to Stratton at Christmas and he can tear through the terrain parks and go to their indoor skate park at night.  We can but this horrible year behind us.  Because Jack, I have enough faith for both of us.  I know how strong and courageous you are because I have been with you every minute.  But know now  you have me and your sisters who love you.  It is our turn to take care of you.  We have faith Jack, everything is going to be all right.

Blood Brother

I was listening to this song tonight.  Blood Brothers.  Bruce Springsteen.  The lyrics "What once seemed black and white have turned so many shades of grey."

This blog started as a diary to chart Jack's hospital stays.  I felt that it was so important to get jack the best medical care possible to fight his Cystic Fibrosis.   So much so, we spent days in the ER at Columbia, because it was the only way to get admitted and to get the best minds in medicine to treat Jack.

I so stupidly forgot that there was so much more to this than just fixing Jack's body.  What about making sure that my beautiful, fearless, wild child stayed wild.  What about making sure that boy who flew down down every hill on his snowboard, flew recklessly through every skate park, who explored fearlessly through life continued to do so.

I have let him down.  While I was so busy making sure that medically he was getting the best care possible, I overlooked that at some point he was going to come to terms with all of this emotionally.

After all, he has spent weeks, sometimes months,  in the hospital from the time he was a baby.  He has endured pain that most never feel.  His life has been abruptly interrupted because of his Cystic Fibrosis.

How thoughtless of me, his mother, to not recognize that at some point this would catch up with him.

I hate Cystic Fibrosis.  I hate this disease and what it has taken from him.  He has more courage and strength than anyone I know.  But now this is catching up with him.

We live in world where are children are expected to be not just be athletes, but olympic quality.  They better get a perfect score on their SATs and graduate with enough ap credits to graduate from college before they start.

My big girl is at Bucknell.  She is smart, beautiful an athlete and committed.  It is not easy being part of this family, as some of our holidays are spent in hospitals or trips cut short and ending up in the hospital, yet she loves her brother and has made it to Bucknell.  My baby girl loves her brother too.  She has always been by his side. She is a freshman, great grades, in the HS play she is amazing.  How does this effect her?

I hate this disease.  I do.  But I will say, my children have risen above this and because of this will be stronger, more empathetic and more equipped to handle whatever comes their way.

And fear not Jack, you are surrounded by girls who love you.  Our love and faith in you is endless and we will get you to a better place.

It's called parenting Liz ...

Its called parenting Liz....

That's what Jack's dad said to me the other day when he came over and Jack was asleep at 5 in the afternoon.  He was angry that I was letting that happen.

Jack has been living the life or riley (I was never quite sure what that meant) this summer.  He plays xBox late with his friends.  He eats at all hours, he has grown 4 inches and six months and no sign of stopping, and he naps when feels like it.  He has no schedule. 

Jack's first week hospital stay was at nine months.  I have lost count of how many time he has been admitted since.  His longest stay was two months.  I do not know how many pic lines he has left the hospital with.  The care of which is awful.  He probably never should have been allowed to go home with the Picc Line.  He has had one picc line infection, that lead to blood infection, he was septic and I thought for sure I was gonna lose my son that first night.  He does therapy everyday, he has been on crazy no fat diet.  This is the life of child with Cystic Fibrosis.  Some go a longtime without these complications, Jack has not been so lucky.  Through all of this his he has shown the strength and courage that I am in awe of.  He never feels sorry for himself or asks why me.  He, along with his two sisters, is my hero.

Yelling at Jack for napping is not an option for me.  He was hospitalized this winter again for pancreatitis, and to add insult to injury, we received some bad news about his lungs the following month.  So if this is how Jack handles his CF, taking a month off in the summer to play xBox, to rest, to eat and grow so be it.

There is no manual for this.  What to expect never covered what to do if your child is chronically  sick.  I consider Jack one of the most capable people I know.  This will play a very important role in his life going forward.  I hope and pray everyday I will be fortunate enough to see what Jack accomplishes as an adult.  I love him with all my heart, and yes if at 15 he wants the summer off... yes Jack you get the summer off.

My youngest Kate is away at camp. She is the most creative child I have ever met.  She reads anything she can get her hands on, knits, sews, sings, performs.  I miss her with all my heart.

In two weeks, my big girl Sam who I could not be more proud of, leaves for Bucknell.  I told a close friend the other night whose daughters are young, if I could do this all over again, I would.

Missing my baby who is at camp for the month and dropping my Sam off at Bucknell is tearing me apart.  So yes, my Jack who is here with me, who has been fighting for his life since he was a baby can have the summer off.  To his Dad I say yes this is parenting.

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.


http://www.kickstarter.com/projects/447490465/hyperion-0



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

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.

https://www.youtube.com/watch?v=v6zfSaG6-9A&feature=youtu.be


This is our story:  https://www.youtube.com/watch?v=xD9Dj4RB1dQ

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

best....

Tonight I signed on to my blog to turn it off.

There was a pending comment.  Thanking me for sharing our story.  Finishing by saying live life like Jack.

We should all live life like Jack.  We should be less concerned with what others think, say, and value.  We should spend our time doing the things we love.  Surround ourselves by those we care about.

I have often feared this day, the day Jack and Kate we come to realize just what it means to have Cystic Fibrosis.  So this is my letter to them.

My darling babies,

From the day I was told you had cystic fibrosis I vowed to fight.  I also made up my mind that you would be Jack and Kate who have Cystic Fibrosis.  Not those kids who have Cystic Fibrosis Jack and Kate.  You were not going to be the Poster Children for this disease and I was not going to let it define you.

I was going to protect you and teach you to handle your CF, but truth be told you have taught me that you are so much stronger than this disease.  You have shown me how to live life and enjoy what we have every day.  You have guided me through this.  Jack, Kate and Sam this was not the life I envisioned, it is so much better.  Your love for one another, your support for one is more than any mother could hope for or dream of.

I want you now to know, you are strong, resilient, and empathetic.  You Jack have spent time in hospital than most do in life time, and you kate have been by his side.  I am the one who is blessed to have you.

Know this my beautiful babies, it is a different world for children with cystic fibrosis.  I will fight for you every day.  Do not worry about your future.  I am not worried.  I am in awe of our strength and courage.

I love you with all of my heart, you have given my live meaning.

Mom mom