Wednesday, June 8, 2011

Why Me Part II

That is the question I most feared.

Why you Jack? Why were you born with Cystic Fibrosis, a terminal disease that causes your body to die slowly? The mucus that should be thin and watery is not. It's thick and provides the perfect breading ground for bacteria to grow in your lungs. Initially we will fight your infections but eventually, your lungs will have so much scare tissue they will not function.

And in addition you pancreas is a mess. You get recurrent bouts of pancreatitis. Its "the drinking man's disease", the next doctor that jokes lay off the beer, I am going to slug.

We live in a world where if a child is not selected to play Varsity, the parents ask "why us". If your nail polish color is not just right, if you can not get a cab the second you want, if you can not get a reservation at a restaurant you dying to go to, if someone sent you an email you do not want to receive, Why me?

My beautiful boy has spent months in hospitals, gone months without eating, never asked why me?

I love this child with all my heart, I am a better person for having him as my son. I do not have any answer.

Why you jack, my beautiful boy I will promise to love you with all that I am, I will fight this disease with you. I will question doctors, yell at interns and fight the school board on your behalf. There is no answer to your question, why me? but we will fight this Jack, we will fight until no beautiful little boy looks at their mother with tears in their eyes and ask, why me?

Why me?

Tonight, Jack, with tears in eyes, asked for the first time, why me?

Recently we have been trying to decide about whether or not to send Jack to High School. He missed so much of the eight grade. He was sick, he was so sick, he almost died this January. All I could think about was keeping him alive. Since he has been home, his father and I have worked tirelessly to find a new doctor, one more capable of handling Jack. His education seemed secondary to me.

Jack, like his sister, is bright. Sam is a sophomore, She is 3.8 grade point average, AP student, award winning writer, Varsity Swimmming and Varsity LAX. A bit hard to follow.

I want Jack to go High School fully prepared. So repeating, a PG year in middle school, seemed a good idea to me. To him.. Jack wants to stay with friends. He wants to go High School, He wants to be like everybody else.

What do you tell your beautiful boy with a terminal disease, who has seen more pain and suffering. Shown me courage and forgiveness. Why you Jack? My head was spinning. How could I tell him, I have asked that question since the day they told me you had Cystic Fibrosis. I have cried, I have wished it were me. I have been so angry at your disease. I have asked how could there be a God, why would any God would let this happen to my beautiful boy.

I answered Jack's question, why me? I felt he deserved an answer. I told him what I wish many doctors had been honest enough to tell me. I don't know Jack. I wish it were me, I wish I could take this away, make it better, that's what a mother is supposed to do. I know this much is true, I know this is your thing, and you have weathered it with courage, strength, forgiveness and resilience. Those qualities will serve you well going forward.

I also said, that I think there should be an award at school, right along with the athletic and academic awards, you deserve it and you earned it.

Then I hugged him and held him. I told him I loved him and I would always be there, In my heart I was hoping and praying he would always be here. With me, where he belongs. I just can not lose this child. I can not lose this fight. And no mother should have to.

Good night my sweet boy.