And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

The Battlefield

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**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.
3 comments:

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.


http://www.thelastlecture.com/


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


Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



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Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst



Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies


* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.

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