Tuesday, November 22, 2011

My Life With Jack: "Let Your Clarity Define You." Rob Thomas

My Life With Jack: "Let Your Clarity Define You." Rob Thomas: I know this much is true. It's been almost one year, one year since I took Jack back to Columbia Presbyterian Hospital. Almost one year si...

"Let Your Clarity Define You." Rob Thomas

I know this much is true. It's been almost one year, one year since I took Jack back to Columbia Presbyterian Hospital. Almost one year since I said good night to my beautiful boy at ten only to have him wake me up at three. Almost one year that would be the beginning to one of the worst years of my life.

I know this much is true. I love my son with all my heart. I love all three of my children with all my heart. Jack tugs at my heart the most. You see it breaks my heart, his Cystic Fibrosis and the pain that comes with it.

December 3, 2010 Jack woke me up in the middle of the night. He had been well for over three years. No signs of the pancreatitis that had landed him in the hospital so many times before. For those who do not know. pancreatitis is one of the most painful illnesses and for Jack simply unforgiving.

I knew we were in trouble when he started to get dressed and asked to go to the hospital. You see Jack had a very high tolerance for pain. And he hated the hospital. If he was asking to go, not a good sign.

Still in what has become a constant state of denial, I hoped he simply had an appendicitis. He would be rushed into surgery and home in three days.

We got to Columbia, hopefully headed upstairs only to be sent downstairs to the dreaded ER. If you have read my blog you know how much I hate that ER. Mostly, its quite scary and once you are in, you a captive and often will not be released, no matter how much scream. for days. Sadly this trip would be no exception.

Within an hour the doctors were back with news. Jack did not have an appendicitis as I had hoped. His numbers were 3.200. 50 are normal. He has having a full blown pancreatitis attack. We were going to remain captive here for months. I just sunk on to the floor and sobbed. How was I going to manage this? His dad had moved away. He had two sisters waiting for me to come home and make dinner. And the dogs needed to walked.

What upset me most, I knew how much pain Jack was in and the pain he would have to go through to get better.

So many people have told me that "you are so strong and capable" Well nothing could be further from the truth. I am coward and not at all capable. What choice did I have? Say sorry we will not be staying for Jack's pancreatitis. I prefer to be at home in own comfy bed and I do not particularly care for your accommodations and staff. For many reasons. Simply not an option.

Well my fears were realized, it was months before Jack was well. Weeks at the hospital. Sleepless nights at home with Picc lines and more trips to the Hospital, once with a near fatal Picc Line infection.

This year is now almost over. And I know this much is true. My son is the most courageous person I have ever met. He never complains. he takes each and every setback in stride and once home appreciates every day as I wish we all could. My girls are everything. They are smart beautiful and driven. With all that has happened they still continue to amaze me with their grace, beautify and compassion. I live in a wonderful community and have friends that have reached out with a phone call or text or a post on my FB Wall at the right time. It helped. I am here and we are ok because of you. I have a brother who I love with all my heart. And he has supported me and loved me through all of this.

I know this much is true. I am a lucky girl. And I am thankful for my beautiful boy who is fast asleep in his bed, in his room, while I write this.