**I realize that my family and many of my friends already know about this part of my history, but not everyone reading here does and it is such a defining part of who I am that I feel it is important to share again.**
My family has a relatively strong military history, and one of the keystone lessons I inherited from this legacy is the fact that you never walk away from a battlefield until every brother an sister is also off of the field. If you are blessed enough to walk off of the field unharmed, you go back for those still fighting and for those who have been wounded. Leaving fighting and fallen brothers and sisters behind is incomprehensible. I believe that this deeply rooted belief is part of the reason that from such a young age I knew that I had to be a special education teacher and there was no other occupation on earth that would be right for me. Of course, this was on a subconscious level and I also delighted in working with children with special needs and the requirement to constantly think creatively and the opportunity to celebrate every tiny step. But I also saw, and still see, in each child what I could have and, according to medical science, should have been. I see my brothers and sisters who are still on the battlefield fighting for equality, for respect, for access, for appreciation of their incredible Abilities, for people to believe in them, for a world without labels, for a chance to just be children. I can not walk away from my fellow soldiers, I can not abandon those who are fighting the same fight and those who are being lost to an ignorant society.
I was born in August of 1981, and other than a bit of drama when my police officer father suddenly remembered his revolver in the delivery room and decided to pull it out to ask the doctor what to do with it (I never claimed he is calm under pressure) all went well. From all appearances I was a healthy, vocal, and very bald baby girl. When I was five months old my mother had rocked me to seep in the downstairs living room while watching a movie on TV. My nursery was upstairs, but she dd not want to miss the end of the movie so she laid me down on a blanket on the floor. As she watched the movie, at her feet I quietly and without struggle ceased to breathe. With movie credits rolling, she bent over to pick me up and discovered a blue-gray baby with no respirations and no detectable pulse. Thankfully we lived in a very small town and within a short period of time following what could only be a horrifying 911 call volunteer rescue workers were holding my life in their hands. Over the next 6 months these volunteers would come to know me very well, and whenever a call for my apnea came in they knew exactly who it was and what was necessary. One even very calmly and rationally told my mother that she could either leave the front door unlocked or he would remove it from its hinges should it ever be locked when he arrived on a call because "his baby girl" was on the other side of that door. He did not have the nickname "Moose" by accident.
After that first severe apnea event I underwent extensive testing, seeking any cause for me to suddenly stop breathing without warning. Finally the only diagnosis the doctors could offer was severe apnea, "Near Miss SIDS" (Near Miss SIDS because had my mom not found me in time I would have died and it would have been attributed to SIDS). I was discharged with the early 1980s apnea monitor which compared to modern technology is as high tech as pong compared to wii. I seemed to average 3 alarms thst required emergency support a week, and my poor brother learned to sleep through the chaos. However, the apnea machine was not portable in that it could not be used during travel. Someone had to use superhuman powers to watch and make sure that I did not fall asleep and stop breathing. The problem is we are all human.
My parents had been brave and taken my brother and I over to the house of their friends. With a fragile infant they rarely got to go out anywhere together, and forget a babysitter! They ended up accidentally staying out later than anticipated and I was sleepy. My amazing, incredible brother did all he could at the wise old age of 6 to keep me awake but he was exhausted too and was soon overcome with sleep. Every fer minutes my mom turned around in the death trap of a Jeep that my father insisted on owning (removable doors? all the better! Canvas roof? perfect!). somehow in one of those gaps I fell asleep and ceased breathing. By the time she noticed, I was a limp, purple-gray rag doll without a pulse. In 1982 there were no cell phones, so calling for help was impossible. She tried to do CPR in the front seat of the Jeep while my father set new land speed records driving to the nearest hospital. My brother slept, so used to chaos. When they came to a screeching halt in front of the ER my mom ran inside screaming "my baby's not breathing" and then literally threw myy lifeless body over the counter to a doctor who was standing there trying to figure out what the screaming was all about. He gets bonus points for a decent catch.
The doctors spent hours trying to stabilize me, and they were able to attain respirations and a pulse but I was still very precarious. Even though I was now alive again, the greatest fear was damage sustained by my brain. When the ambulance arrived to transport me to the Children's Hospital, the emergency room doctor came along with me in the ambulance because he believed that I would crash again before I reached Children's and it would require more than the skills of a paramedic to have any chance of bringing me back. At Children's Hospital they achieved physical stability and assessed my brain functioning. I should add that at the time this was the very best Children's medical facility in the state, and among the top in the region.
The doctors called my parents into one of those little meeting rooms that just constantly weep grief from other "talks". In no uncertain terms the doctors informed my parents that based upon every test available I had suffered massive, irreversible brain damage. This damage was so severe that it was going to be terminal before my first birthday and that during my remaining time I would just continue to suffer longer and longer apnea episodes. Even if I somehow made it to my first birthday I would be so profoundly brain damaged that I would never attain any skills beyond those I had attained before this apnea episode. They then suggested that my parents sign my care over to the hospital for the remainder of my life because it would be such a tremendous burden, and that they allow the hospital to be responsible for my treatment for the remainder of my life. To reassure my parents, they were encouraged to have another child because they were still young. My mother firmly informed the doctors that I was not a car that you return to the dealership when it is damaged and then you just go get another one to replace it. I was her child and she did not give a flip about how "damaged" I was or how hard it would be to take care of me. I was coming home with them and until the time of my discharge they had better do everything to keep me alive.
I continued to have severe apnea episodes until right around my first birthday when it seems my brain finally was able to make the necessary connections to regulate breathing during sleep. After discharge from children's I continued to meet every developmental milestone right on time, except for some delays in motor skills. When I was talking in complete sentences before I turned 2 and began reading at 2 1/2 my parents were reassured that brain damage was not really anything to worry about. I entered Kindergarten reading chapter books, doing 2-3 grade mathematics, writing multiple page stories on a typewriter, writing poetry, and concerned about issues like poverty and discrimination. My motor skills were delayed growing up, but nothing that limited my access to play with my peers. When the public schools tested my IQ to determine what form of gifted services I would require, I definitely did not demonstrate brain damage as I tested very well.
According to all of the testing and some of the best doctors available I was given a diagnosis of profound and terminal brain damage. There is no medical explanation for why I survived with so few signs of these prolonged periods without oxygen to my brain, and why I lived when other infants did not. I was given a gift and I have a need in the depth of my soul to use it wisely and to make a difference. I can not walk away from the children who were not allowed to escape, who are still fighting, who are the most amazing, most brave, strongest, most individual and willful, wanting to claim their place in this world, that I know. You never leave your brothers and sisters behind.
August 31, 2009 at 11:28 AM
I think you should just write your book already--- Your writing is as mesmerizing as that professor -- who wrote the last lecture...
surely your audience would be as diverse.
August 31, 2009 at 11:29 AM
http://www.thelastlecture.com/
August 31, 2009 at 10:54 PM
Failing to come up with some profound and pithy comment I'll just say I'm proud and happy to meet you, on the battlefield.
Barbara
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