Thursday, January 19, 2012
My brothers and sister and I are all named after saints. Kathrine, Elizabeth. Robert and David. Raised a Catholic, I went to church every Sunday. I never ate meat on Fridays during lent. I was baptized, had my first holy communion and of course my confirmation.
I believed in God and Jesus Christ. When I was ten my parents took me to see the opening of Andrew Lloyd Webber's Jesus Christ Superstar. I loved it for many reasons. It was familiar, it was what I knew. I believed it. My favorite song was Everything is alright, everything is fine.
I believed in heaven, I believed that everyone was good. I had a lot to learn.
When Jack got sick I started to question my religion. Over the years, I have spent days in babies hospitals watching my baby suffer and other babies suffer. I had to ask myself "where is God?".
I have had friends who have lost their fight, their children are gone. What God would let that happen? Some say they are in a better place. What better place than here in their mother's arms.
From the time Jack was first diagnosed, seven months old, he would sleep soundly in my arms, while I told him "everything is alright, everything is fine."
Now he tells me that. He assures me that "Everything is alright, Everything is fine." Go to sleep Go to sleep, let the world rotate without you tonight.
I once ha a vision. This little girl dressed in white came to me, and said, I am fine and I will be back to get Jack.
I know now that everyone is not good, the world is a dangerous place. But I believe that Jack is right. Everything is alright, everything is fine. Tonight.
Wednesday, January 18, 2012
One year ago today, after four days of fever, I reluctantly took my beautiful boy to the Emergency Room at Columbia in the city. Jack had spent three weeks there in December with Pancreatitis. Some who develop this with their CF spend a couple days in the hospital rest it, no food or water and go home. Sadly for Jack, this is never the case. Jack's is unforgiving. And after ten days in the hospital, I was told Jack needed a Picc Line.
Picc Lines provide a way to give medication or food to a patient. What I do not like about them, they require a lot of work. They are prone to infection and extremely invasive.
This particular hospitalization had been so hard on me. It had been almost four years since Jack had been in the hospital. During that time, my brother died. I realized just how devastating that was and feared it more than ever. How does a mother follow her child's coffin out of the church?
My friends and the girls never let me down. There were emails and phone calls and facebook posts. I will forever be grateful for that. My girls, strength, beauty, love and compassion, the words I use to describe them. They have their own story to tell.
However, Jack's father was not in a good place and unable to help the way he had in the past. I was alone in every sense of the word. My girls were struggling without me, Jack was struggling with me.
One year ago today, I was headed back to Columbia in complete denial. I was so sure that Jack's fever had nothing to do with his Picc line that I told the girls we would be home for dinner.
I could not have been more wrong. The girls did not see me for four days. When I came home for a change of clothes. The emergency was packed and pretty quickly I was told that not only was Jack's line infected, he now had a life threatening blood infection. He was hooked up to every monitor and that ER sprang into action. I thought at least we will get a room. Wrong again. we spent the next 48 hours in that ER. Jack almost died that first night. I had never seen him so sick.
My friends called and that helped. Having said that, the one relationship, I had but so much time and effort into, well I would rather not say what happened. Just know you find out what someone is made of during a time like this. I was alone. It was just me and Jack and we were fighting like hell.
Jack is my hero. He not only survived but at one point turned to me and apologized for me having to sit all night in a chair. Can you imagine. Where did this child come from?
It took a while, but our family has never been better or stronger. My children are thriving, their Dad is very much a part of their life and I have someone in my life now, someone who cares.