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

Loss


"He that conceals his grief finds no remedy for it." Turkish proverb
"Give sorrow words. The grief that does not speak whispers the o'er fraught heart, and bids it break" William Shakespeare
"If you suppress grief too much it can well redouble." Moliere
"The risk of love is loss, and the price of loss is grief. But the pain of grief is only a shadow when compared with the pain of never risking love." Hilary Stanton Zunin
"There is no grief like grief that does not speak." Henry Wadsworth Longfellow

This is going to be a heart-wide-open, raw and vulnerable entry; there will be no attempts made to dress up my emotions in their Sunday best and tie pretty ribbons around the truth nor is it dressed in rags for dramatic effect. It is real, it is pure, and it is honest.
Lately I have been dealing with a grief I have never experienced before, and a grief that is difficult to process or explain to others. I hurt deeply, ache as though my heart may fall apart, have times of feeling bitter anger, and at times am sadly resigned to the situation. I am mourning the loss of so much of my life, the things that brought me such joy and defined who I was as a person and shaped my existence, and the loss of countless dreams that are now forever out of reach. It is not just a loss of what was but a loss of what could have been, a loss of the past as well as the future. In many ways I feel like some part of me has died. I go on with my life, I have good days and days of laughter and treasured memories, but something is achingly absent like a part of me has been cauterized. I don't want that old self to die, I don't want to surrender those old dreams, I don't want to admit defeat and have to allow this to change my life forever when I was so blessedly happy before. For the past 18 months I was able to lie to myself and hold on to the illusion that there was still some chance that there would be a treatable, curable diagnosis identified and I would be able to resume the life I had been living as if it had just been put on pause for a while. Now that I have a diagnosis of Mitochondrial Disease, I have to accept that there is not only no cure but no treatment. That this is a progressive disorder which may continue to steal away parts of my life, continue to rob me of dreams, continue to deny me of aspects of life that I use to define myself. If I did not live my life full out, living in every moment, living with no regrets, living at 100% with passion I would not have so much to grieve, but then I would not have so much love in my life either. It hurts more because I live more, I push boundaries, I defy expectations and definitions, I play by my own rules and love openly - love life, love others, love God.
Yet I mourn so many losses. I mourn the loss of my independence, for I have always been fiercely and proudly independent. I miss being able to just decide to go somewhere, to go exploring or on a short day adventure and not be limited to the ability of others to transport me. I mourn the loss of my physical abilities. I will never again chase after my niece and scoop her up in my arms as she squeals in laughter. My feet will never feel the rocky ground beneath them as I hike up the side of a large hill, using my arms to pull myself upward. Kneeling on a tiled floor I will never again guide the feet of a child as they take their first tentative steps. I mourn the loss of many of the things that brought me great joy and served as ways by which I defined myself - my work as a teacher and a volunteer, my passion for photography (it is much harder to access places to photograph and the angle is different in a wheelchair), my love for nature and hiking and exploring. I mourn the dreams lost, large and small. Dreams of ever being allowed to provide foster care or adopt children (I long ago understood that I can not risk having children of my own), dreams of hiking parts of the Appalachian trail, dreams of missions trips, dreams of dancing someday at my wedding, dreams of classrooms full of children.
I recognize that I can, and am, creating new dreams and a new sense of self but for now I am still mourning what I lost. The wound where it was ripped away is still too tender and too fresh to withstand the abuses of life without pain. It takes time, it takes patience, it takes growth of those new dreams and that new hope, and it takes acceptance of the grief.

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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