Friday, June 02, 2006

On Life, Strength, Discrimination and Slugs

Last March, I wrote a little post about my trip to California to care for my mother. As I stated there, I normally do not write about my personal life, but I wanted to share a sad story about discrimination of the very young.

Not many know on the blogosphere about my youngest child. Bridget is her name. Her name means "resolute strength" and on that evening when she was born, that was her gift to me ... strength. You see, she was born with a very rare syndrome, called Apert Syndrome.

Bea, as we call her, was born with her skull bones, her hands and her feet fused. She required immediate surgery to place a colostomy in order to save her life, because she was also born with an imperforated anus. We had no idea about Apert Syndrome, nor did the hospital where she was born. But our pediatrician, who came immediately after her birth, knew of it and told my husband and I, much to the rejection of the hospital staff.

Family at a time like this will express a love and care that is so unconditional. My father had just died 2 months earlier of colon cancer that had metastasized to the liver. My sister had just become a Cardio Vascular surgeon on the West Coast. My mother hopped on a plane and my sister made the initial calls because she knew exactly where we would be taking our daughter for her Cranial Facial Care.

And so began our life at NYU Medical Center. Bea endured 19 surgeries there. But I took my children to so many different places after our appointments with specialists or for a pre-surgical test. Bea hated having blood drawn and it would break my heart when I would have to hold her down while they stuck the needle in. At 3 months of age she was such a forceful little child. So we decided that we would always visit the Greenhouse after the needle episodes, this way Bea would know it was over for that day. From there we would go to the Met, the Zoo, Central Park, Chinatown, and many other places.

When surgery came, which usually lasted 8 to 10 hours, NYU would set us up with a studio apartment directly across from the hospital. This way we could all be together yet not far from our child. My 3 year old at the time just loved the city at night. She said she loved the way it sparkled. It never occurred to my 3 year old that Bea was different. She thought it was normal that baby sisters were born with their fingers fused together. It was not until she was watching a video of herself, that she came to realize that she was born with "whole fingers." The beauty of innocence.

Through all of this we always maintained the belief that Bea was special, but not something to be hidden away. I remember getting into the elevator at a store a week or two after a cranium surgery. The stitches were still in Bea's head, but we had to do some Christmas shopping. The man in the elevator looked at her down in the carriage and made such a face and then turned away.

Being that Bea was a girl, and of course would want to paint her toenails when she got older, she simply needed to have separate toes. So we needed to find a little wheelchair for her, because she had to keep her feet elevated for 4 weeks. I remember my older daughter got into it one day and tried to make a sandwich. She turned to me and said, "This is hard to maneuver."

One morning when I was in the shower, I noticed that the door was opening and whose head pops in but Bea's. I asked how she got out of her bed and to the bathroom, she said, "I crawled Mommy, I wanted to talk to you." She crawled all over the place and returned to her preschool with the casts on and crawled around. The teacher called me and asked me to come down to the preschool one day. When I got there, the teacher said, "I just wanted you to see what your daughter has done to my class." I peeked in to see all the kids crawling around, too. Well, she got those lovely toes separated and she DOES paint those toenails.

Unfortunately her hands were much more difficult and after 8 surgeries she has 3 fingers that do not bend and stubby thumbs. But it has never stopped us from teaching Bea to be self sufficient and independent. So we had many, many spilled glasses of milk, but she did learn to pour herself a beverage by naturally adapting the way it is done. We would allow her to "mix." Bea would take whatever she found in the cabinet and measure it and put it in a large mixing bowl. She was so proud of those mixtures. I don't know if my husband was, because he would return from work and see the mess in the kitchen and simply say, "Oh, I see Bridget has been mixing again."

Bridget went to elementary school with the same children she crawled around the preschool with, so there was no problem with acceptance, until a new child moved to our town. Then we would have to educate the parents more often than the kids. The hardest task was learning to write. She knew she would use a computer but we wanted her to learn to at least have the ability to write in some form. She did not like writing lessons, but very soon after that we switched her over to a laptop. There is no stopping Bea from writing today. Her classmates are envious, of course, that she has one of those nice little compact laptops that she carries from class to class. They are also envious that she is able to type at lightning speed.

Bea dances hip hop, plays the bells and sings in the Chorus. She is just finishing up 6th grade now. This year she decided that she wanted to be part of the morning announcements at her school which are televised in all the classrooms. The teacher who ran the program was a little hesitant to have her join, so she told Bea she would have to join the communication club and become familiar with the protocol. Bea went to that communication club every week and while other kids were allowed to join in with the morning announcements Bea was told to just continue with communication club.

Well, finally the teacher threw Bea a bone and allowed her to appear on the announcements to read a "Wacky Fact" once a week. Bea knew the procedure like the back of her hand and when she asked to change to the MS spot, the teacher said no, she was slated for the wacky facts. Then other kids were allowed to take the MS spot, who had never joined communication club. That is when Bea came to me and expressed her feelings of being passed over.

Yesterday I spoke with the teacher about why Bea was not being allowed to read the announcements and what I heard simply hurt my heart. She said that Bea does not have the talent needed to perform the morning announcements. She said that Bea "needed to bite the bullet and accept the fact that she was not talented in this area and that she never would have that talent." For 10 minutes this teacher verbally insulted my daughter about her lack of talent. She then said that she did not want to put Bea on the television because she did not want the other children to make fun of her. No one made fun of my daughter, they accepted Bea and they all wanted her to join the morning announcements. The teacher told me to tell Bea to "keep plugging" and she would find another interest.

My daughter was being discriminated against because she did not fit the mold of a pretty girl. The teacher said she would talk to Bea, but I told her, "NO, I would take care of it and please do NOT talk to Bea." Never would I have allowed my daughter to subjected to such cruelty. So yesterday I told Bea that there are some people that she will meet in her life who will be unfair. I told her that the teacher was not a kind person and that it would be better if she not join that club next year. Bea knew what I was saying and she asked, "Should I just quit doing the "wacky fact"?" I told her not to quit, to finish out the next two weeks. I did not raise my children to be quitters, nor were we going to start just because of one teacher.

I then told Bea that there will come a day when we will be judged. She asked how this woman would be judged and I told her she would be found unkind. Bea thought about it for a moment and said, "Mom, I think we will be judged and then we will be reincarnated. I think this teacher will come back as a slug."

Here is a picture of my daughter, so very full of life and with a smile that will melt your heart.

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