For the Record

For the record  . . .

I cry.

Not every day.  Some weeks more than others. 

Usually in the morning on my drive to work when I have peace and quiet and time to think.

Sometimes at night after I tuck Jack in for the night. 

I cry when I look into Jack’s eyes and he looks so intently and deeply into mine and it’s clear that he has so much he wants to tell me, but can’t. Imagine having a headache, an itch, a desire to adjust your weight or reposition your arm or leg, play with a toy, read a book, choose the movie you want to watch or the music you want to hear, or being thirsty or hungry or wanting to give your mom a hug and you can’t tell anyone where it hurts, what you want or how you feel and you can’t do anything by yourself. 

I cry when I think about how absolutely wrong it is that Jack was given a mind that is completely “tuned in” but a body that holds his thoughts, feelings and desires hostage.

I cry when I look at old pictures of Jack and see the progression of his disease a little more each year.

I cry when I look into Jack’s eyes and he looks distant and tired, as if he’s saying “enough”.

I cry when my phone rings at 5am and it’s my nurse calling out and I have to cancel a full schedule of clients because I can’t go into the office.  I cry out of frustration because I am a prisoner to the nursing I so desperately need in order to keep my job.

I cry when I ask how much longer does Jack have to continue to live this hell on earth and yet I cry when I think about how much time I have left with him. 

Crying is very cathartic.  It releases the sadness, the loss, the anger, and the hopelessness I feel.  Crying allows me to put it all out there on the table and then pick myself back up and keep on keeping on. 

For the record . . .

I smile, laugh and find happiness in this life too.