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

My Grown Up Christmas List





Dear Santa Claus, Kris Kringle, Christkindl, St. Nicholas, Sinterklaas, Mikulas, San Nicolo, Pierre Noel, Father Christmas,

I am quite certain that I am trending more towards that naughty list than the nice list, especially if swearing and sarcasm are taken into consideration, but I decided to take my chances and write you my grown up Christmas list. If I have been too naughty, instead of bringing coal could you please deliver the equivalent amount in barrels of crude oil - they trade better on the open market. If I have tipped over into the nice category, below are some suggestions of things that would be really great to receive this year although they may be a little challenging to wrap up and top with a bow, but that is why you have the Elves working in your sweatshops year round. Don't worry, there are no labor laws for Elves yet so you are in the clear.

1) I would like a hippopotamous for Christmas. Preferably a baby one named Ethel. 
2) I would like a can of Stupid-B-Gone to be used in situations where ignorance can not be corrected by education.
3) I would like snow and ice tires for my wheelchair. You know about snow. Now try steering on that crud with thin wheelchair wheels, propelled by metal push rims in subzero windchills.
4) I would like for my buddies and kids with special needs to be more than tolerated in society but to be accepted and appreciated. I tolerate lima beans when I am served them, but that certainly is different than accepting an offer of a new food for dinner and appreciating a homemade three layer birthday cake with gorgeous decorations. 
4. I would like my body weight in chocolate. All organic and grown by regional farmers, in an assortment of flavors including dark chocolate, milk chocolate, white chocolate, and truffles. 
5. I would like for money and health care and food to be more equally distributed in this world so that no one dies because of hunger or a preventable and easily treated disease. No child should go to bed hungry, wondering if and when they will eat again and where there is such a thing as clean water of what a home is.
6. I would like a disco light for underneath my wheelchair because if people are going to stare I want to rock it out. 
7. I would like an end to killing one another in the name of God. If we all claim our God is a God of peace and love, how can we then kill in His name?
8. I would like to have enough of everything, but never so much that I forget to appreciate all that I have. Enough love, enough joy, enough peace, enough hope, enough grace, enough mercy, enough providence, enough success, enough trials, enough learning, enough friendship, enough miracles, enough laughter, enough memories. I would like to never take forgranted all that I have been given.
9. I would like enough for all of my loved ones, my friends and family, those who share this journey with me and provide me with support and laughter and encouragement. 
10. I would like a diagnosis if you can find one of those laying around.


Thank you!
Love,
Bethany
4 comments:

My husband loves chocolate... he really liked your wish about that!
I liked them all..


What a great list. Except for the hippopotamus.


Dear Santa,
Please put Bethany in the nice category and grant all of her wishes.

Barbara


Ditto on what Barbara said! Merry Christmas Bethany :)


Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



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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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