- Posted January 21, 2013 by
This iReport is part of an assignment:
Photo essays: Your stories in pictures
OUR CRUSADE FOR JADE
HELP SAVE MOM'S SMILE!
OUR CRUSADE FOR JADE - OUR HEMANGIOMA STORY
APRIL 12, 1994
It's a GIRL! The doctors told us Jade was born with a birthmark called a hemangioma. Our family & friends said she was kissed by an angel. They were right!
Our daughter's hemangioma took us on a different path than we expected; heartbreak one moment & joy the next. They say that everything happens for a reason and we believe this is true although we may not have always felt that way. We learned so much from this bundle of joy about ourselves and how society places so much emphasis on outward appearance. 6 mths after bringing Jade home she did,t look like the baby I gave birth to. The changes on her face were alarming and many people found her appearance frightening. While we grew to love her little face with her bright red soft bulbous nose, sadly; others did not. And so began our CRUSADE FOR JADE
HOME FROM THE HOSPITAL:
As we ventured out of the house for the first time our excitement to show off our beautiful daughter to the world would soon turn to sadness and disappointment. Strangers would gasp at the sight of our precious girl's little face. We were followed wherever we went. We could hear the whispers and see them pointing. We worried about her future and still do. It was a difficult time for us and yet now we can look back and recall so many wonderful memories. We would not change one moment. Jade is our hero.
Halloween was one of our favorite holidays. It was the 1 day of the year that Jade could pretend to be whoever she wanted & no one seemed to notice her differences. There weren't the usual stares, pointing and whispering. We had so much fun watching her trick or treating and we caught it all on tape and in photos. Jade never wanted a traditional costume. She was a pumpkin, an angel, a gypsy, a devil, a football player, Batman, an Indian, a Hawaiian hula girl, and even the Statue of Liberty. She had so much fun and we have so many wonderful memories.
Dr. WANER - OUR MIRACLE:
We had never heard of hemangiomas until the birth of our daughter. There were no support groups & we did not have a computer or internet at the time. We were dealing with the unknown & we were dealing with it alone. 2 1/2 years later, a chance meeting would lead us right to Dr. Milton Waner. He gave our family hope for the 1st time in over 2 yrs and meeting him would change our lives forever. Dr. Waner is the kindest and most gifted surgeon we have ever met. Even though he has treated so many patients over the years, he had a way of making us feel special. You could tell this was personal for him. I remember Jade's very 1st operation in Little Rock, AK. We were worried, concerned, nervous, & excited. We grew to love Jade's beautiful face just the way it was. Her nose was large & red and yet soft to the touch and it gave her so much character. Her facial expressions were priceless. We knew she would never look the same after this first surgery. Jade was very attached to her mommy and I asked if I could carry her into the operating room which the staff so graciously allowed me to do. They seemed to sense how much I wanted and needed to be there. Jade was crying & hanging on to me for dear life and they could not peel her away from me. When I entered the large, bright white operating room, there were lights and masked men and women everywhere. I sat down on a chair positioned right next to the operating table with Jade clinging to me. I was told to turn away as they gently placed a mask over her face until she became limp in my arms. They were finally able to take her away from me and placed her on gently on the operating room table. I kissed her softly on her forehead and her big blue eyes just stared up at me.
Dr. Waner told me she was asleep even though her eyes were open. It took everything I had to leave her there. I turned away and walked through the massive exit doors alone. At that point every emotion that I had held back in the operating room came flowing. I was walking alone through a long hallway, tears streaming down my face when suddenly Dr. Waner appeared. It was as if he knew I was going to need some reassuring. I will never forget that moment. In fact, I am in tears as I write this. He put his hand on my shoulder and said, "Don't worry, I will take good care of Jade", and indeed he did. Dr. Waner took care of our daughter through 11 operations and the results have been amazing. How can we possibly thank this extraordinary person enough? Dr. Waner, THANK YOU!
Soon after Jade's first few surgeries we decided it was time to send her to school. We had waited to send her because we knew from our previous experiences that children were very frightened by her appearance. So at 4 years old Jade began pre-kindergarten at a local private Christian school. She was so excited that she barely looked back at me and I just sat in my car and cried. We were so happy for her and Jade truly loved school. She was smart, polite, and friendly and the teachers adored her. The children were nice to her but they didn't embrace her as we had hoped. In fact, they avoided her whenever possible. When she was younger she seemed oblivious to their actions but as she got older she started to notice.
As the years passed, our daughter became the child chosen last or the child "not chosen at all." She played alone on the playground, sat alone during lunch & created imaginary friends. I never wanted her to feel alone but some things couldn't be avoided. We made sure she knew that she could always count on Mom and Dad. Jade was stabbed with a pencil in class & bitten on her back during recess right through her sweater. I remember seeing those teeth marks & the confusion on her face. Jade was a top speller & chosen to participate in the Spelling Bee but when it came time to choose teams & practice, no one wanted her on their team. She just sat there at her desk all alone as they began to practice before the teacher finally looked up from her desk & realized what happened. This happened more than once. After 5 yrs of school we noticed alarming changes in Jade's self esteem & happy personality. She was always angry & she took her frustrations out on Mom. One day she told me she didn't know if she loved me because she didn't know what love was. I was devastated. My husband & I made a decision to home school & it turned out to be the best decision for our family.
Update & Jade's Future - 11 surgeries later:
It had always hoped to return to work but things don't always work out the way we plan. Home schooling, fund raising, taking care of Jade & our home is my priority and kept me very busy. I started my own Pet Sitting business which I ran for several years, sold items on Ebay & craigslist,& had garage sales to help supplement our income. I clipped coupons, shopped at thrift stores, and sold the little bit of jewelry I had to help pay bills. My wonderful husband worked side jobs & overtime whenever possible. Even though we've been quite frugal the economy has taken a toll on our one income family. We don't qualify for any assistance. Many of Jade's operations were not covered under insurance & NONE of our travel costs were covered. I honestly don't know what we would have done without the generosity of the gifted surgeons & so many kind strangers who donated money, food and even lodging to help us. Like so many, we live day to day, paycheck to paycheck. We have no retirement & our debt continues to grow & yet we know we are blessed. Jade has come a long way & we're so proud of her. Just when I thought I could return to work Jade was diagnosed with OCD/ADD. She lives at home & is an English major at college with a 3.75 GPA. Her OCD challenges her daily. She struggles to focus. Therapy has helped. Jade is fearful of driving so I'm taxi mom for now. In 18 yrs I never had a babysitter. I sacrified everything for my family and now: