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

My Amazing Mother

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Most mothers give their infants life once, which is a beautiful miracle, but my mother spent a year in her life breathing life back into me and giving me life again and again. I was born an apparently healthy infant, bald as bald could possibly be and full of attitude, and giving no signs of the genetic disease that was already written in every cell of my body. When I was five months old my mother was rocking me to sleep while watching a movie on TV. She did not want to miss the end of the movie, so she laid me on a blanket on the ground rather than taking me upstairs to my nursery. When the movie finished she discovered I was grayish blue, not breathing, and had no detectable heart beat. The monster in my genes had decided to rear its head in the form of relentless apnea. My mother learned infant cpr, I was hooked to a monitor, and no one ever slept through the night. Our address became well known to every fire fighter in our small town and they did not bother to knock on the door if a call came in, they came through the door one way or another. Yet the apnea was vicious. After one particularly prolonged episode at 6 months of age, my parents were taken to the little room no parents ever want to go to and informed that I was profoundly and terminally brain damaged with a life expectancy of less than six months. The recommended course of treatment was to leave me hospitalized or placed in an institution until I died naturally of another episode. My mother refused to give up on me. She informed the doctors that I was a child, not a used car that you return and replace because it is broken. I went home with her that day. The apnea continued up until my first birthday, but my parents persevered and delighted as I met every milestone. When I started to read at two and a half, my mother realized that she was in for a totally different ride than any of the doctors had tried to prepare her for.
My mom has been my biggest supporter. She believes in me even when I am unsure. Without her support I never would have had the courage to apply to Vanderbilt, let alone done well enough on the scholarship weekend to win a full Deans honors scholarship. Without her support I never would have had the courage to apply to Virginia to teach and I would have missed some of the most amazing children that touched my life, and an incredible friendship with a friend unlike any other. Without her support I would have never had the strength to go through the torturous ordeal of relearning to eat in early 2009 when I had lost the ability to swallow, and I would be dependent on some sort of artificial nutrition. Without her I would not be me. I would not have my very keen sense of justice, my heart for others, my willingness to risk getting hurt to love those who need it, my passionate way of living life, my foundation of faith, my wicked sense of humor, and so much more.
So not only has my mother given me life more times that we can count, but she has shaped that life and given me the strength and support to be the person I have become. I an blessed to be her daughter, honored to be her friend.
3 comments:

And therefore I love your mom, too. Without her, I would have never met you. Her love for you has blessed everyone who knows you. Barbara


Well the apple doesn't fall far from the tree, as they say. You are both such fighters...you've both fought more than any one person should ever have to, but here you are with much to show for it. Happy belated Mother's Day to your mom!


Dear Bethany,

We are huge fans of And God Laughs over at Glam Media! We’re one of the top 10 online media companies in the US and would love for you to help pilot our new Health & Wellness Community at Bliss.com, slated to launch in the coming weeks.

If you’re interested, please contact me about joining our community for the launch!

Cheers,

Sandy Hayashi
Community Partners Editor
Glam Media
sandyh@glam.com


Job 8:21

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



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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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