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

The Little Things

In this crazy world I am caught up in of doctors and testing, of rare diseases and unanswered questions, of radical and rapid life changes, of the unknown and unknowable it is often the little things that catch me with my defenses down and pierce my heart. I am battle weary but armed and prepared for the daily foes of magnitude, I am not prepared for the simple things that slip past my guard and bring me to my knees. The past few days have brought several little things that evaded my armor and struck at my heart and soul in ways I was not prepared for and never imagined. When I reached into a box and pulled out my hiking boots, with small rocks and packed dirt still wedged into the tread, my defenses were unprepared. Almost exactly a year ago I was delighting in the fact that my body was doing things I had never dreamed possible, that I could find such freedom in movement and explore the world around me away from the overcrowded community on the fringe of the city. I was pushing boundaries, taking time to see my surroundings in an entirely new way, appreciating my freedom, bathing in the peace I found in the middle of God's creation. I spent every weekend that I could in the local state and national parks, and I felt most at peace and most free during those times. As my fingers traced the heavy treads on the bottom of the boots tears poured down my cheeks. I am still mourning for what I lost, and the grief came flooding in waves like a tsunami. I was angry, I was bitter, but most of all I was anguished. It was about so much more than the boots that I clutched like a life line. In the same way that it was about more than the year long access card to the national park that I used just once, last September, before becoming sick or the T-shirt from the summer of 2008 when I was able to not just teach amazing kids at The Pittsburgh Project but do things like go up and down the 40 stairs to my room without hesitation or the valentine from one of my preschool students. It was about the very raw and very vivid grief that lurks just below the surface, a tangle of emotions that I am sorting out but if I tug on the wrong one everything comes tumbling down into a heap, a grief that wears many masks. Sometimes it wears the face of sadness and dispair, other times it wears the face of bitterness or anger, and still other times it wears the face of detachment and withdrawl. Yet it is always the same truth beneath the disguises, and it is a process of letting go and accepting that is so difficult. There are good days and bad days, good minutes and bad minutes. In so many very real ways, my life that I knew has died and I am mourning for that death. Yet I am also so thankful for all that I do have, and I continue to fight and face the battles that rage within and over my body. Just when I think I may be getting closer to really accepting all of this and moving on, a little thing sneaks beneath my defensees and the emotional wounds open wide again. I know it will take time and faith and God and grace and mercy and hope and faith and time, and that for once in my life I am absolutely perfectly normal in regards to something. Sometimes, as I stand guard against the dragons and the giants, the monsters and the boa constrictors, I wish there were not quite so many little things.

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.