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

Nuts With Stones

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I am a Rebel Christian, although after today I am not so sure I like the connotations associated with the label. While using public transportation, I had the driver of the bus actually have the audacity to inform me that if only I prayed the right way and had enough faith I would be healed. At that instant, the entire notion of separation of Church and State flew past my head and right on out the window. Seeing as how my wheelchair is literally strapped to the floor of the bus, I could not leave even if I wanted to without his assistance. He continued to inform me that God will heal anyone if they bring to him the proper scriptures in the proper prayer and have sufficient faith. When asked how on earth that accounts for the death of children, whose faith is noted in the Bible as the most pure, I was informed that it was because no one prayed properly for them. Really? You mean the five year old little girl that I loved with all my heart who died two weeks after her fifth birthday my first year teaching died because her parents failed to say the right prayers? If all it took to heal someone was faith, why are so many parents on trial for the deaths of their children treated by faith and prayer who died because medical intervention was ignored? I was then informed that because I had no faith, I would not be healed, it would not work for me. As if my disability was a direct result of a flaw in my faith and my inability to properly pray. Faith is getting up each morning and continuing on this journey. Faith is trusting that there is a greater plan and purpose to all of this. Faith is not surrendering, not allowing myself to believe that God has caused this or abandoned me. Faith is putting one foot (or wheel) in front of the other when you have no idea what lies ahead but you trust that you will be guided and protected. That is faith, and that is a lot harder than lecturing and intimidating some stranger held as a captive audience. Faith is not throwing stones, it is not judging, it is not prejudiced, it is not hurtful. Earlier in the journey I also learned that apparently women are becoming to much like men, which is abhorrent to God, and that it is a woman's role to look pretty for a man. This man is a very good example of why I hesitate to announce myself as a Christian, and why I proudly state that I am a Rebel Christian. I can not stand the abundance of judgment and stone throwing, the hypocrisy and self righteousness that taints so much of the Christian church. This man condemned my faith and my spirit in the name of the same God I worship, and that is incomprehensible to me. He represents everything that causes people to turn from Christianity - lies, judgment, deceit, condemnation, hypocrisy, prejudice. He is a nut with stones to throw, nothing more and nothing less. But those stones still hurt, and leave you feeling somehow violated and assaulted. Does my wheelchair have to be a magnet for EVERY single crazy person in this damn town?!?

As a mom, who prayed like crazy for her child, I sure appreciate your post! Faith is knowing that even though God could have changed the circumstances, He allowed them. And because He promises to, He will redeem them.

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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