~Henry David Thoreau
My dear sweet son, how I wish you were here with us to see all the snow. How I wish you could be here snowed in with your family. How I wished so desperately for you to remain here with us on earth. How I wish I never had to have a conversation with you about where and how you wanted to be buried. How I wish I could take that pain from my mother's heart. How I wish I could hold you in my arms and tell you that everything was going to be alright and you would be able to breath again! How I wish that things had turned out differently for you and thus for all of us who love you so and are grieving so hard for you every day. How I wish that just one person had looked a little harder at you and saw the things that I did. How would things be changed? How will I ever learn to live my life without you?
When I look back on last year at this time, all I can remember is how sick Nick was all the time. It breaks my heart to read my notes on his cough, his lungs, his "blasts" back in the CNS despite the IT chemo, the constant battle to get someone to tell me why Nick was feeling so poorly almost five months post transplant.
After Nick's discharge from his Xmas/New Year's admission of January 2009, Nick was being seen in the clinic for his treatments. The "clinic" is not where you want to be unless you are well on the road to recovery. For Nick this was not the case and for some reason Nick's condition just kept going in the wrong direction. The issue is that no one seemed to be paying attention to the subtle changes that were happening. No one was doing a physical or taking a history. No one was taking the time to sit down and actually make an assessment. No was actually looking at the VS that were written down on a piece of paper and entered into a computer with each clinic visit. No one was listening to a distraught mother and excellent nurse who put all this information right in front of their noses and still no one listened, no one took heed, no red flags went up, nothing.
The signs were all there and they were plentiful. The problem was no one was reading them. No one really took the time to get to know Nick in that clinic so Nick became a number. Nick fell through the cracks of a system overloaded with patients. A system with not enough nurses and not enough attention to detail. A system full of very sick patients with no one to listen to their concerns or pay attention to their problems. In Nick's case, attention to fine detail was needed, Nick did not get that attention and now he is forever gone from my life.
I want someone at Johns Hopkins to take responsibility for this flawed system. I want people to understand the pain they have caused me, my family, and so many who loved Nick. I want them to live up to their own publicity!
Welcome to The Johns Hopkins Hospital
"From the moment you arrive at Johns Hopkins, you become part of a long tradition of distinguished health care. Since our doors opened more than a century ago, our mission has been excellence. We strive to lead the world in the diagnosis and treatment of disease and to train tomorrow's great physicians, nurses and scientists. Above all, we aim to provide the highest quality health care and service to all of our patients.
Our commitment to excellence shows. We continually make news, introducing new therapies and furthering medical discovery. We know, however, that good care involves more than good medicine. That's why our concern for you extends to every aspect of your stay. We want your experience at Johns Hopkins to be as pleasant and as comfortable as possible. "Does "comfortable as possible" include spending the rest of your life buried beneath a tree?
Because no one medical person chose to "see" my wonderful son, I will never see him again. Nick's future and mine as his Mom are forever gone. My life is forever altered. Now I find myself writing about grief, writing about mourning for a child lost, writing about trees.
And see the peaceful trees extend their myriad leaves in leisured dance-
they bear the weight of sky and cloud upon the fountain of their veins. ~Kathleen Raine
A man is a bundle of relations, a knot of roots, whose flower and fruitage is the world.
~Ralph Waldo Emerson

4 comments:
Dear Diane,
I can only imagine (and truthfully I do not want to imagine) the horror and sadness you are going through. I do know that once this first year passes, you will feel a little better, because you will not be reliving what happened last year at that time. At least with my dad that's how it was I was not reliving his last year on earth, after that first year. I know you are searching for answers why things happened the way they did. I certainly understand that, but Diane, some things we will never know why. I know that stinks, but sadly that is a fact. I know having answers helps with a little closure, but Diane, you may never have that answer. Just remember Nick would not want you to spend to much time searching for answers that are not there, he would prefer you to live life and try to search for some happiness. Again easier said then done, but try to keep that thought in the back of your mind, and in time maybe you can do that. I pray for you to find a little happiness.
Love,
Mary E
{{Diane}}
~P~
My heart aches for you and for the fifty Bonnaroos that can never be shared. I can offer no of words of wisdom or consolation.They dwell in a blurred vacuum beyond my reach. The hands that were dealt are cruel, unfair and unexplainable in every realm of my reality. I will love Nick forever and will forever miss the comfort and joy he brought to my son and to our family. I wish every day that he was here. The feelings that escape me, the words that evade me and the courage that has abandoned me would flow from Nick, for he was an "old soul" who could do it just right.
A very excellent,eloquent and heart-rending post. I plan to republish it as one of this week's Guest Posts at Being Cancer Network at www.beingcancer.net. I will include two links to your site as well as a link to the original post. Youshould see an increase of traffic to your site. I will also place your site on the Honor Roll for Excellence in Cancer Writing. Many benefit from your continuing commitment to write about your experience.
Take care, Dennis
Post a Comment