If your baby tastes of salt he is not long for this world.

Its an old Irish saying.  When Jack's first sweat test ( a test to diagnose Cystic Fibrosis) came back borderline I hit the internet.  This Irish saying just stuck with me.

Jack at seven months old had a cold that would not quit, horrible reflux issues had not slept since the night he was circumsized.  Finally we had a possible answer.  Cystic Fibrosis.  But I did not like this answer and went to the internet to prove they had no idea what they were talking about.  Not my beautiful boy.

"If your child tastes of salt he is not long for this world."

That night after everyone was asleep,  his older sister all tucked in, I sat with jack nursing him and rocking him, I licked his forehead.  I did it again just to make sure. It was salty.  He tasted like salt.  The tears rolled down my cheek as I rocked Jack to sleep that night.  And for so many nights to come.

I have not thought about that much till tonight.   I went to New York City to a gathering of Doctors, Families, Children and Drug companies to hear the latest about Cystic Fibrosis.  There was a new drug, a little blue bill from a company called Vertex.  This drug did not address the symptoms of Cystic Fibrosis.  It stopped the disease.  CF is a progress disease, once it gets some traction, you can deteriorate at an alarming rate.  It is a fatal disease, there is no cure.  Could this be the call I have been hoping for?

The drugs are gene specific now so for some, the news is very encouraging. Not for me,  no good news yet.  So I listened to a Doctor tell me the good news for other mothers.  I listened to the father making an passionate plea for $50,000.  And then there was Emily. Beautiful Emily twenty something, CFer.  She was there to talk about how she participated in the trial (she had the right gene) and how effective the drug is.  I listened while she talked about feeling better.  She was able to breathe, able to go for long walks, workout without losing her breath.  Her lung function was improving.  Unheard of.  Then she said after completing numerous test (all positive) for her doctors, she did her own CF test.  She  licked her arm when no one was looking, for the first time in her life, she said she did not taste of salt.  Thats when I started crying.

For the first time since this journey began. I truly have hope for all the mothers there waiting for their call or waiting for that moment when no one is looking, that they can lick there child's forehead and not taste salt.

She is gone ...

and she is never coming back.

Today someone from the past said "you are not that girl I met 30 years ag .. ".

Well she is gone, and she is never coming back.  When I was in college, I was so naive.  Simply put, I wanted to have babies and be a mother.  In order to accomplish that goal, yes get married.  Those were my priorities and in that order.  I even decided to date tall guys because I wanted my girls to have long legs.

The father of my beautiful babies is 6'4", my girls have legs that go on forever, and so does my beautiful boy.

For years I lived the dream.  I had a beautiful house in Rye, home to my three gorgeous babies tons of wonderful friends with bundles of there own.

My marriage was far from perfect, but that was incidental.  I was happy, so very happy.  Three babies in three years.  I loved being pregnant, I loved newborns and I loved toddlers.  Sam my oldest was wise from the start.  She hit all her marks way before she was supposed.  Thankfully, She was the only one had the time to read What to Expect the First Year.  All was going well.

Then Jack my baby boy got sick.  He got really sick.  I was told again and again there is nothing wrong with your Mrs. Clark other than he has an older sibling at home.  Finally my BFF Nikki declared Jack belonged in hospital (she is british) and I took him to a new Doctor.  She sent us to Columbia.

Well you know the rest.  Jack was sick and the baby I was carrying was too.  Life as I knew it would never be the same.  Nothing in my past prepared me for my future.

But I have learned is that life is a gift and so are my beautiful children.  Sam is a wonderful older sibling.  she is great role model, fabulous student athlete and driven.  Also she treats them as any older sibling would...

Kate the baby, is my baby.  She is a doll.  She is the self appointed care taker of her brother.  Sweet, smart beyond her years and very sensitive.  She reads anything and everything she get on hands on and has a vocabulary four times mine.

Jack, my beautiful boy continues to surprise me with his strength and courage.  As anyone who is familiar with this blogs knows .. last year fucking sucked.  jack was so sick, hospitalized, sent home with a pic line he missed so much school.  But he survived.  he lived.  He fought.  His reward for that, we held him back.  So he watched all of his friends go off to High School.  He stayed behind.


He did not complain, instead he got As, he worked hard and last week he moved up to HS.  He is back with his friends.  I teared up when the principal told me this news.  I told them, I wish you could see how strong he is when he hospitalized.

I am so off base at this point, so back back to the beginning.  That girl is gone, the one in her cute little bright green sun dress.  Instead I am here.  I am the mother of three beautiful children, two with Cystic Fibrosis.  They have given me  a purpose, filled my life with love and laughter and taught me there is so much more to life than the right dress.

I am glad that girl is gone.  She did not know the first thing about what is really important.  I survived and I learned everything that is important in life from my beautiful children.  Her Beautiful Boy.

This is me today.

MY LIFE WITH JACK: Thank you Boomer and everyone at BEF

MY LIFE WITH JACK: Thank you Boomer and everyone at BEF: "http://www.clubcysticfibrosis.com/index.php/site/category/caregivers/"

Thank you Boomer and everyone at BEF

http://www.clubcysticfibrosis.com/index.php/site/category/caregivers/

Happy Birthday My Beautiful Boy!

Tomorrow baby you are going to be 14 years old. You fought hard for this birthday Jack. The year you turned six, you fought hard for that birthday Jack. You entered the hospital for what we thought would be 48 hours. Nine weeks, two surgeries, ten blown IVS, four specialists and one Broviac Port later you came home two days before Christmas. You were not better, they just gave up, sent you home with an invasive port and enough medical supplies for third world country and told me, I was in charge.

Eight months later, I was an unwilling expert at taking care of a Broviac port. That year was behind us. More followed each of them three years apart. And then just when I thought I could catch my breath, the pain was back and we started all over again. This year, the worst by far, hit hard. First off Jack I knew that a picc line infection could be fatal, I was so not prepared to see you that sick. It scared me Jack. I have never seen you like that. For the first time I realized that one day we could be in Vermont, skiing and playing monopoly and 48 hours later you could be in Columbia's emergency room, every monitor available hooked up, fighting for your life.

Your birthdays are hard Jack, you getting closer every year to those statistics. Are you going to be part of the 50% that celebrate your 30th or part of the 40% that never see there 20s. What's it gonna be? Either way, with each birthday we are edging closer to those statistics. The ones that I never like to think about. The statistics I think about only when you are in the hospital or on your birthday.

I know I should feel confident Jack, you have such a strong will, drive and determination. You have never once felt sorry for yourself and in fact never talk about the hospitalizations. You have a love for life and an appreciation for it. Will that be enough?

I know that I am now going to pack your trunk for camp and I am absolutely heartbroken. A week without you? I will miss your smile most Jack. A week just seems so long. If I can not bear the thought of not seeing your smile for a week, how am I ever going to survive...

Stay with me Jack. I will Fix you. I promise.

MY LIFE WITH JACK: My Brown Eyed Girl.

MY LIFE WITH JACK: My Brown Eyed Girl.: "Its been a while. One summer when Jack was four, long before he got really sick, we took a trip. We went for a four day sail on Brown E..."

My Brown Eyed Girl.

Its been a while.

One summer when Jack was four, long before he got really sick, we took a trip. We went for a four day sail on Brown Eyed Girl. She was a beautiful 44 foot sail boat, Drew was our captain and Mimi his wife the main crew. It was the only time that we just brought Jack with us. Mimi and Drew Shea brought their four year old Haley and Jack's bud. Haley like her mother had a very strong spirit and was already an avid sailor. We left Stonington Harbor en route to Newport RI. I have been many times, but coming into Newport on the water... well it was truly something I will always remember. We met up with the a the rest of AYC American Yacht Club from Rye NY. We docked and headed off for a BBQ, Drinks and a great first night.

Jack loved the water. He settled into life on the boat effortlessly. While at the time Jack had been diagnosed with CF and had been to the hospital once, I had no idea that a few years later we were about to sail into the roughest seas ever. I cherish my memories from that trip. Jack new nothing but happiness. Life had been so good. He went to the nature camp. dressed in his button down, and slacks, pushed his red car or anything he could find with wheels, and finally appeared to be potty trained.

I will always remember that time on the Brown Eyed Girls with Jack. Haley and jack bunked in the bow of the boat. They woke up having hilarious conversations. They loved life on the boat. And I must say, we enjoyed nothing but smooth sailing, well until the last day. As long as there was a shower wherever we docked. Mimi liked her shower, and so did I.

My favorite stop was Shelter Island. I learned a lot about boys that stop. We put our anchor down in the bay. Mimi made a call and a gorgeous boy showed up in a launch and took Mimi and me to the Club. We showered and ordered Sea Breezes, the bar tender instructed to have them on deck so we could see the sun set. It was Lord of the Flies back on board. Jack and Haley were jumping in naked, the dads had no control over the situation at all. Jack loved every minute of this freedom. He was so happy, no idea the rough seas ahead.

Mimi and I made our way back and now it was the guys turn to go a shore and shower. Drew tried to fire up the launch from the boat. He was huffing and puffing but he could not get that launch to start. Mimi and I said we could make a call and that cute boy would come back. Drew refused he was going to get to shore on his own. A guy thing. Finally he did. Mimi and I settled in with Jack and Haley. We had wonderful night rocked to sleep by the gentle waves.

It was the last day we encountered some rough seas, and I watched as Drew took the helm and sailed our boat through the current. Jack and Haley, life preservers on, held tight and seemed to enjoy the ride. I had know idea the rough seas that were ahead for me and jack. But like our time on Brown Eyed Girl, Jack handles whatever comes his way.

He loves when the seas are calm. He lives every day like its his last. He is on from the time he wakes up. But when we hit rough seas, he takes the helm, and does what he needs to do to get to calmer seas.

I love my son. I admire him. his strength and courage. I will be here to navigate those seas with him, wherever that is.