Sam Starts Up

My baby,ok she is turning on March 13, and she is having a party.
Samantha Jill Klein was born on March 13, 2001. She is named Samantha after her paternal grandfather Stanley, who perished on Swiss Air flight 111 in 1998. Her middle name Jill is named after my Aunt Janice who was my mother's only sister.
Sammy rebels. She tries desperately to get "love" she feels she missed as a baby. I had a major Vascular Flap Transplant on my face, On march 13 2001, her first birthday.

That second year of her life my face my right side of my face had some complications and the swelling was double the size of my other side of my face.
I didn't know at the time my operation I waited 25 years would have effects that showed up later in her life.

When Sammy was three and a half years old, on July 24th 2004 i recieved a phone call from the NYC Police Dept. They informed me my daughters were on the bus on there way home from day camp when a driver went through a stop sign , hitting the mini bus, on the right side flipping the bus over and "I screamed" are they alive? They told me one daughter had minor injuries, and my other daughter was in very critical condition and I should go to some hospital in Queens, NY.
I must have drove 80mph and in 10 minutes I burst through the emergency room, she was in the first room, the one that was used for the worst injuries. I saw at least 5 doctors, another 4 nurses and I got closer and screamed "where is sammy"s Arm? her right arm was degloved, no skin was attached, and all I saw was blood.
Suddenly my litle one, called out "hi mommy" she was alive.
The bus flipped on sam's side and even though she was in a Child seat she went through the glass and her arm was dragged on the street a few feet.
Her Arm,"where is her arm?' a strange doctor pushed me in the hall and said she has a arm, she is lucky.
I stayed by her side for over a month she was hospitalized from her wounded arm.The eve of the accident a doctor was able to pull up her skin and cover the wound.We never picked the plastic surgeon. He was nervous but performed the 10 hour operation. My mother and brother waited with me till Sam was in the recovery room at 3am. My mother who loved her family morethan herself, went over to Sam and patted her little head wrapped in bandages and said "Ok, to my brother Charles we can go home." I was always going to remember that memory of her.
I was so tired those four weeks, my mother tried to take over and send me home for some rest. My mom who went through so much with me, still at 70 years old was "mommy" I needed her so much.
She would always have a scar because there was not enough skin to use.
Another nightmare my daughter didn't have Parry Romberg Syndrome thank god,but she would have to deal with some of the issues I went through. My heart sank. Sammy and I have had many conversations when she is asked about her arm.
She and I have more than a mother daughter bond/ we share things that nobody else would ever understand. Happy Birthday Samantha

I Love YOU SOOOOOOOOOOOOOO Much.

Mommy

Should Parents Post Photos of Their Children with Parry Romberg Syndrome?

I often wonder if Parents think about the effects of posting images of their own child suffering from Parry Romberg's Syndrome on a cover of a magazine .
Often the parent makes the decision for the young child without their approval.
The stories I have read about a few young patients with Parry Romberg Syndrome is done with the best of intentions I am sure.
BUT, are these photo's doing more harm than good to a young teen girl who see's her face and the facial damage the syndrome has caused plastered on a national publication that millions will view? I would have been horrified to say the least if this was done to me at the age of 13 or so.
Children that have Parry Romberg Syndrome do not like to have their photo taken.
I HATED IT.
When my parents realized this they quietly removed the huge famaily portrait from my brother's Bar Mitzvah from the Living Room Wall.
My face was used for medical publications that did not show my identity. This I feel was for the good of medical research.