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

No One Promised Life Is Fair

Life isn't fair. It's just fairer than death, that's all.
William Goldman, "The Princess Bride"
We are a generation of entitlement, a generation that believes that just because we exist we are automatically entitled to a life that meets some arbitrary definition of "fairness" and "justice". Last time I checked, my birth certificate did not come with any warranty or life time guarantee. There were no promises made, no refunds or exchanges offered, and no manufacturers warranty covering any part of the product.  This is life, not a lifetime movie in which everything works out hapily ever after once you use the required number of kleenex for those appropriately emotional moments, moments that are acceptable because you know the end will always be positive. Reality is not a movie of the week. You take what you are given and you have two choices. You can demand that you receive something else, that you exchange or get a refund of sorts and complain bitterly about the injustices of having not received all that you feel entitled to or you can suck it up and deal, living life as it happens and appreciating the fact that in all honesty we are entitled to nothing. The world owes us nothing but we tend to demand an awful lot from it, thinking we are somehow special and set apart. I am frequently told that somehow the way that I live my life is courageous and brave or that I am doing something extraordinary in how I am dealing with all that has happened in my life. I don't see it that way. I never signed up for this, I just happened to receive this body with all of its genetic misspellings and malfunctions. I can waste my life yelling that it is unfair, but that will change nothing. It will not undo what does not work right in my body and it will not guarantee me more time to experience being alive; it will rob me of precious time to treasure life and to make the most out of every single moment. I refuse to allow the things that went wrong to define me or to limit me or to prevent me from living my life. I only have this life and there are no guarantees or refunds or warrantees or exchanges and I do not feel that I am somehow so special that I am entitled to a life set apart from the realities of the world. Sure, it absolutely sucks at times and I get frustrated and overwhelmed and angry. Then I have a good cry if necessary and suck it up and deal because I am still so blessed. This is my life, and I can do nothing other than live it the best way I know how. I don't see that as anything special or brave or courageous. It is just ordinary me living the life I have been given and refusing to let a moment be wasted on false senses of entitlement or pity when they could be spent in joy and celebration and hope and wonder. I can dance and laugh and sing in the rain just as easily as I can in the bright sunshine, and puddle stomping is grand fun.


1 comments:

The weather is good wherever you are. Excellent.

Barbara


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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