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

And the survey says.....

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Every month Vanity Fair magazine has a short interview, called the Proust Questionnaire, that they do with someone famous or powerful or more than likely powerful because they are famous. Seeing as how I have hit a dry spell with topics to write about (be prepared for old teaching stories soon), I decided to interview myself using this Questionnaire.

What is your idea of perfect happiness?
 Knowing that I am loved and that I love others unconditionally


What is your greatest fear?
 Failure, being defined by my illness instead of my passions in life and my longing to make a difference


What is the trait you most deplore in yourself?
Worrying and Doubt
 
What is the trait you most deplore in others?
Hypocrisy 
 
Which living person do you most admire?
Sarah from Sarah's Covenant Homes (see link on side bar) - she is doing what I have dreamed of doing and rescuing children who are "tossed away" simply because they have special needs
 
What is your greatest extravagance?
Fancy flavored coffee for Klaus, my Keurig coffee pot; apps and music for my iPod (I use it for coping)


What is your current state of mind?
Processing and deep in thoughts, wandering within itself
 
What do you consider the most overrated virtue?
Pride and Independence - the inability to ask others for help when needed
 
On what occasion do you lie?
To protect someone's feelings (sometimes)
 
What is the quality you most like in a man?
Love of children, ability to engage with children and truly kneel down to be at their level
 
What is the quality you most like in a woman?
Being above the pettiness and back stabbing that goes on too often in friendships
 
Which words or phrases do you overuse?
"suck" a duck - I have no idea where this came from, and it may not seem like it but my kids have taught me a varied and creative cursing vocabulary
 
What or who is the greatest love of your life?
God
 
When and where were you happiest?
Walking the boardwalk in Ocean City; Hiking
 
What talent would you most like to have?
Artistry
 
What is your most treasured possession?
My journals and books and binders and scraps here and there that contain my writing
 
What do you regard as the lowest depth of misery?
 Celebrating a child's 5th birthday and then two weeks later having her funeral


What is your favorite occupation?
Teaching children with special needs
 
What is your most marked characteristic?
"No one puts baby in a corner" (I had to get a Dirty Dancing reference in somehow); an odd mixture of fragile innocence and wisdom almost beyond a single lifetime 
 
What do you most value in your friends?
Their willingness to be there through the good and the bad, to never give up on me, and to see me for who I am
 
Who is your favorite hero of Fiction?
Jonas from The Giver
 
Who are your heroes in real life?
Children with disabilities who have to work exponentially harder to achieve a goal and who push, who strive, who work and work without giving up and usually do so while still laughing and smiling and just being a kid; and the parents of these special children who serve not just as parents but as nurses, therapists, social workers, advocates and so much more
 
What is it that you most dislike?
The fact that it is still socially acceptable to use slurs against people with disabilities and that we have yet to achieve tolerance, let alone acceptance
 
What is your greatest regret?
I try to live life with no regrets
 
How would you like to die?
So old and well lived that I welcome death with open arms, ready to step into the new eternal life that awaits me there
 
What is your motto?
I will stand back up. You'll know just the moment when I've had enough. Sometimes I'm afraid and I don't feel that tough, But I'll Stand Back Up! (Sugarland)

2 comments:

If I was as smart and mature as you are when I was your age I would be powerful and famous now, too.

You.are.incredible.

Only one disagreement - coping tools are not extravagances.


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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