Tuesday, October 25, 2011

I Will Try and Fix You.

Dear Jack, my beautiful boy.

Its been a while since I have written.  I have started this journal when you were hospitalized last December.  One of many times.  Heartbreaking nights spent in the ER followed by weeks in the hospital and then home with Picc Lines and Ports.  You have always shown me how strong, passionate and resilient you are during your hospital stays Jack.

Last spring we made the heartbreaking choice to hold you back, repeat the 8th Grade.  Mostly fear that you would be unprepared, you had missed so much school, you had spent too much time in the hospital.  The decision broke my heart.  Your hospitalizations this time were particularly brutal.  Your Picc line infection, which was near fatal, took everything out of you.  Your survived Jack, you fought with all your heart and soul.

And your reward, I was holding you back.  I was making you stay in the eight grade while all your friends headed off to High School  That was your reward for working so hard to get healthy, to live.

Well you headed off to the 8th grade, your sister texted that you looked lonely in the cafeteria.  To Sam a popular Junior at Rye Hight this was devastating.  You said nothing Jack.  Not a world.

Three weeks in to the school year the principal called me into her office.  She sat me down and said we needed to talk about Jack. I just sat there ready to fight for you, like I always did.  She said "Mrs. Clark we are moving Jack to Rye High".  You had straight As and had worked so hard and done so well, everyone at the Middle School was convinced its where you belonged.  Tears rolled down my cheek.

My beautiful boy Jack, so far this life has been hard, its thrown so much at you.  I have lost count of how many days you have been hospitalized, how many needles, picc lines, IVs, ports you have had.  How many times you have been medicated with moraphine for your pain, told you were not going home.  Through it all, you have been a shining light Jack.  Your only question for the Doctors "When can I go back to the Skate park?"  You live life well Jack.  You rarely complain, You never take a breath without being grateful for it.

I will spend the rest of my life trying to fix you Jack.  I love you with all my heart.  I will make sure that the competition you won recently at the skate park will be the first of many.  I will fix you Jack.



Tuesday, October 4, 2011

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.