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

Three views, Three Laughs

He waved his pudgy little hand at me and squealed in delight from the confines of the child seat in the front of the shopping basket. While his mother was preoccupied with selecting between cold medications, he carried on an enchanted "conversation" with me through waving and cooing and his brilliant brown eyes. In his eyes, I was a marvelous wonder of a "big person" conveniently seated at his eye level for the exact purpose of engaging in tales of the world as he experiences it. When his mother finally threw her selected medication into the cart and made her way out of the aisle, she never even noticed me even though her son continued to call and wave and bounce in his seat until they rounded the end of the aisle.
She peered at me with the appraisal of a child who is processing something new and trying to figure out how to make it fit into her knowledge of the world. As we waited for the elevator, she alternated between fidgeting with her toy cell phone and sneaking looks in my direction. To her five year old mind, I was a new encounter and she was fascinated but also trying so very hard to avoid being rude. I can only guess, but I would suspect that her past experiences with individuals who use wheelchairs has been limited to either medical environments (i.e. hospitals) or to much older individuals and at a very young looking 27 years old navigating the world independently I defied all known rules. I met her glance with a warm smile, and she shared her shy smile with me. I had to laugh as she repeatedly looked at me, in my wheelchair, and then a group of elderly individuals, some of whom were also in wheelchairs, as if playing the old Sesame Street game "one of these things is not like the other".
They stood before me blatantly staring at me, yet refusing to step to one side or the other of the aisle so that I could proceed. Their looks were not inquisitive in nature but degrading and repulsed. At about sixteen years of age, the four of them had the developmental skills to comprehend the fact that people have disabilities but apparently were lacking the social learning as to how to interact with people who were not just like them. My patience does not extend to ignorance, and so I offered them a simple choice: move or I will see just how many of them I can take out in one good roll down the aisle in wheelchair bowling. Apparently this made sense to them as they grumbled and shot dirty looks at me, but did rapidly discover that it is possible to walk without occupying the entire width of a store aisle. I do wonder if their little necks are sore from trying to stare at me behind them as they walked? :)
Three different ages, three different interactions, three different perspectives of me as a young adult who uses a wheelchair within the course of one day. Each one left me laughing, in a very different and unique way. Laughing at the innocence of a toddler, at the perplexed struggle to comprehend written on the face of a preschooler, and at the ignorant egocentric behavior of teenagers. Laughing at what it means to be human.

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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