Monday, April 11, 2011

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.   


CS said...

Damn, Ann. Today wasn't going to be a crying day but this guts me. I love how you've always been so honest about the life you have but always end it with, "I smile, laugh and find happiness in this life too." Wonderful. xxooo

The Hogan family said...

For the record...I cry too, for some of the same reasons and some different. When is comes to being your child, there is a lot to cry about. Right there with ya!

Christy said...

So honest, Ann. I love it. Not that you cry or that you have every good reason to (how I wish that wasn't the case), but your honesty. I hope this doesn't sound weird, but it was a beautiful post.

Many hugs,
Christy xo

Justin and Victoria Nelson said...

sounds like we are in the same place, my friend.
crying and laughing with you...

Anonymous said...

i often feel this way when i look at my students (who are all preschoolers with medical/cognitive delays).

is jack a candidate for any of the eye-gaze communication devices? one of my students just got one and its amazing. it takes a while to learn, but it also takes a while to guess what they want to say...

thanks for sharing jack. he's such a sweet guy!

Susan said...

Oh HUGS Ann! There is no winning this one and so to cry seems the natural thing to do. But of course I'm glad it's not all tears.

Vicki said...

Catching up a bit after a busy month or 2. I think of Jack every time I read about a new way for people without speech or movement to communicate, & feel so sad & frustrated for him and for you. Hugs for both of you from our side of town.

worthy said...

ok, that's my crying done for the day I think! Thanks Ann, for being so open an honest in your blog posts. I too, cry, some weeks every day, other weeks hardly at all. Sam makes me laugh and cry at the same time and sometimes I just want to really shout at him. it's the not being able to communicate that is the worst part for me, because I know I have an intelligent child but he just cant make himself understood. Thank you for sharing your life and Jack's with us xxx

tess said...

Bleh. xoxox

Anonymous said...

Miss you - love you - You are the best!
Hugs to you and kisses to Jack
OH and Thanks for the good cry I just had!!!

The Marangella Family said...

I cry too....more than I'd like to admit....hang in there my friend!

ssouth said...

Letting a little rain fall through the clouds each day has to be better than droughts, floods, and violent storms, right? Thanks for sharing. Love. Love. Love.

Anonymous said...

Hi this is the first time i have read your blog and i'd like to say wow you are amazing and an inspiration. I have a child with special needs and keep a lot of the pain and hurt inside as i feel the people around don't want to hear about our pain as when we try to talk they shut down. And i think it is fantastic for someone to share their personal thoughts and to be so honest.

I have sat here crying reading and relating to your pain and feeling encouraged by your joyful moments. And to be honest still crying now with the sounds of the wosh of our ventilator in the background.

Thank you for sharing and making me realise it's actually ok to feel the way i do sometimes.

Clare xxx