The 5%, Cystic Fibrosis and the Corona Virus.

Georgetown sent all their students home in the wake of the Corona Virus Pandemic.  Well most.  Kate, my beautiful daughter, is staying.  You see Georgetown felt their students were safest at home.  And for the most part, they are.  Kate has Cystic Fibrosis and home is Westchester County NY.  The largest cluster of the Corona Virus in the Country.  Georgetown decided it was not safe for Kate to come home.  Which is heartbreaking.

Why is the largest cluster of the Corona Virus in Westchester, NY?  World travelers, family in China, Italy?  No, it is the home of one arrogant lawyer named Lawrence Garbuz, who having traveled through a NYC airport in February, long after the virus was making headlines, got sick.  He went on to infect hundreds. I will get back to that.

My children, diagnosed early on with CF, are no strangers to staying home.  I remember when I was first told about how their Cystic Fibrosis would manifest itself.  They would get repeated lung infections. The infections would damage their lungs, so much so that their lungs would not function.  I came up with the perfect solution, they would never leave the house.  I would keep them safe.  That worked well until Jack learned how to walk.  He walked and then he ran.  He ran right out the front door,  kate followed and from then on there was no holding them back.

I learned to try and keep them safe.  Relying on those around them to do the right thing.  Sick? stay home.  Coughing, fever?  Stay home.  Be responsible.

I have spent their lives keeping them safe.  Jack has struggled, but two months ago went on Trikafta,  a life saving drug for those with Cystic Fibrosis.  I thought I am home free.  And then the Corona Virus hit.

It only affects the five percent. That is what we were told early on.  Let me tell you something about the five percent.  When Jack was seven months old, they wanted to test him for Cystic Fibrosis.  He had been so sick.  I was told "Mrs. Clark, there is a 95% chance he does not have it."  He did and he does.  So I am familiar with 5%.

Back to the lawyer.  Most families are together during this crisis.  Mothers are looking after their children who for the most part are not at risk.  I am not. I am mother with a child who is most at risk.  She is not here.

The lawyer, very symptomatic, refused to stay home. He attended three large gatherings in two weeks, a wedding, a funeral and a bar mitzvah.  He continued to travel on metro north.  He is responsible for the largest cluster in the US.

To you Lawrence Garbuz, I hope the party was worth it.

#cysticfibrosis #coronavirus #coronavirusny 

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.