Wednesday, September 14, 2011

Wednesday, September 14, 2011

Tonight's picture was taken in September of 2008, in the Lombardi Clinic of Georgetown University Hospital. Mattie was a month into his treatment, so he had already lost all of his hair, but still had complete use of his limbs. This picture was taken before any of his limb salvaging surgeries. As I tell people all the time, Mattie entered the hospital in August of 2008 walking! But after his first limb salvaging surgery in October of 2008, Mattie's physical ability was impaired and certainly by November of 2008 (after his second major limb salvaging surgery), I never saw my son walk independently or run again. I don't say this lightly and I hope you can imagine how devastating and frightening this was for a six year old boy who was unable to move around and be free! The beauty of tonight's picture was it showed the fun, humor, and antics of Mattie. Jenny and Jessie (Mattie's art therapists) found this large box for Mattie, and he decided to transform it into a little house. A house for ONE! Mattie felt that if he was in this house, the nurses and doctors couldn't touch him and he would be safe. Life in the hospital was challenging for Mattie, but having Jenny, Jessie, and Linda (Mattie's childlife specialist) helped tremendously. They embraced Mattie's creativity and Mattie's need to control certain aspects of his life. These professionals are constant reminders to me of the importance of flexibility and openness when working with young patients and their families. When supporting children who have life threatening illnesses, there is NOT a one size fits all strategy that works.

Childhood Cancer Fact of the Day: Approximately 2,300 children with cancer die each year (that’s almost 4 children a day) (CureSearch).

My mom and I walked 3.8 miles this morning around her neighborhood track. We walk and talk about all sorts of things. Today was a beautiful weather day, not a cloud in the sky, and the sun was glorious. My mom, dad, and I spent the rest of the afternoon together having lunch and doing things around town. However, I feel exhausted. I came to California emotionally wiped out and I haven't regained ground yet. My head and eyes feel very tired and I also got a call from my doctor yesterday letting me know I have yet another infection. As I say often, my grief physically manifests itself in my head (with severe daily headaches) and in my bladder.

My friend Charlie sent me the article below yesterday. I appreciate receiving this article because just the title alone makes me want to scream and throttle someone..... "NJ Mother Reportedly Forced to Remove Photos of Deceased Daughter from Cubicle." I invite you to read this article which I found very revealing and interesting.

This NJ mom lost her daughter to cancer. In her office cubicle she posted pictures of her daughter and also had her daughter's ballet slippers on display. Apparently her boss told her that she NOT only had to remove all of her daughter's items, but she was told she could NO longer talk about her dead daughter at work. The boss stated that several of her colleagues were uncomfortable when she talked about her daughter. ARE YOU SERIOUS?!!! Clearly free speech and expression maybe part of the first amendment of the Constitution but in the workplace, the apparently the Constitution is NOT valued or upheld.

The US workplace frowns upon those who are grieving. Employers and colleagues usually give a griever about a week or so of time to heal, but then after that, business as usual is expected. The griever is then forced to live a split life, a life at work in which one is supposed to be happy and "normal," expressing NO signs of sadness, depression, or pain, and then the life outside of work, where true feelings are safe to explore and discuss. The problem with this split life is that it is HIGHLY unnatural. Grief is a part of life, well maybe not the grief of losing a child, but everyone in the workplace can relate to losing a loved one. Asking someone to squelch this important aspect of their life is equivalent in my perspective to asking someone to come to work, and detach one's arm by the front door, and then pick it up on the way home at the end of the day. An arm is typically a vital part of one's life and functioning, and I am pretty sure no employer would ask for one to sever a limb as admission to the office. Well asking someone to enter the workplace each day and NOT talk about a child who died is equivalent and just as barbaric. Our children are a large part of us, they guide our lives, they give us direction, a purpose for the future, and provide us with incredible amounts of love. Grief impacts our physical and mental health and the greatest medicine to heal grief is to give it a voice.

Unfortunately in the law suit, this mother lost her case. However, she is continuing to fight so that grief will be one day addressed and accepted in the workplace. This is a very valuable and noble cause. Most Americans spend more time in the workplace then at home, so if our losses can't be shared and processed with co-workers and friends, then when will this happen? I am sorry if the discussion of grief makes others uncomfortable. I am not only saddened by that notion, but I am very disheartened to know that this mother was not supported in her grief, but instead made to feel like she was the pathological one. Those who are grieving need to talk and to be understood. That is VERY normal and very natural, I would instead challenge those who shy away from such existential discussions to re-evaluate one's self. The problem is NOT with the griever, the problem is with our society. We all will eventually die (it doesn't matter whether you are rich or poor, educated or uneducated, a democrat or a republican, etc), and burying our head in the sand about this notion serves no purpose. Also turning one's back on a fellow colleague during his or her time of emotional need to me is unconscionable. Check out the articles below and come to your own conclusions.

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Cecelia Ingraham, New Jersey Mother, Reportedly Forced To Remove Photos Of Deceased Daughter From Cubicle

Almost two years after her daughter Tatiana's death, Cecelia Ingraham was reportedly forced by her boss to remove photos of her daughter from her cubicle, as well as Tatiana's ballet slippers, Courthouse News Service reported.

Ingraham sued her workplace, Ortho-McNeil, Johnson & Johnson and DeStefanis for discrimination, constructive discharge and intentional infliction of emotional stress.

The publication went on to describe the incident in question:

"He [Ingraham's boss] allegedly told her that several of her co-workers had complained about her tendency to talk about her daughter's death, which made them uncomfortable. And he said she could "no longer speak of her daughter because she is dead" and should act as if her daughter 'did not exist,' the ruling states."

ABC news had more on Ingraham's reaction:

“I was still in shock. Nothing was coming out of my mouth at the time because I was still in shock and I was in disbelief,” Ingraham testified. “And I said to him, I cannot believe that. I says, I don’t see anybody avoiding me. They always come over, they give me my work.”

Afterward, Ingraham left work and didn't come back, according to ABC. A few days later she had to have heart surgery for sudden heart palpitations. Soon after her recovery, Ingraham resigned from the job and entered the lawsuit.

The New Jersey courthouse ruled against Ingraham, however, saying that the defendant did not intentionally inflict emotional stress on the mother.

The reason? According to the presiding judge, Judge Victor Ashrafi, the workplace is too complex to concretely narrow down motives.

"The workplace has too many personal conflicts and too much behavior that might be perceived as uncivil for the courts to be used as the umpire for all but the most extreme workplace disputes."

According to The Daily Mail, Tatiana was diagnosed with acute lymphocytic leukemia in 2003, but fought it into remission. Sadly, two years later the cancer returned, and she eventually died in May of that year.

Another article about this case:
http://jobs.aol.com/articles/2011/09/07/court-rules-boss-can-tell-grieving-mom-to-act-as-if-her-daughter/
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