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

Christmas Presence

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What you do speaks so loud that I cannot hear what you say.
  - Ralph Waldo Emerson

I will be the first to admit that it is incredibly easy to become entangled in the mob scene of pop-culture Christmas and the frantic energy to buy love, to give love in shiny packages and dollar signs, and to measure worth and value in things. After all, society inundates us with the message that only perfect is acceptable, only more is even worth considering, and only money spent speaks of love.

Last Christmas season I had an in-depth, advanced level course in the fact that all of the superficial things that receive the publicity and glamor of the holidays are meaningless. I spent 11 days from December 12 through the evening of December 23 inpatient as doctors tried and failed to determine a diagnosis regarding the progressive muscle weakness and inability to tolerate food (and go figure, one year later the second verse is an echo of the first). Yet even though I was 500+ miles from all of my biological family, I was not alone. Just as I had not been alone when I was first hospitalized in October, or any of the time in between. God has blessed me with a second family in Virginia, with incredible friends who constantly amaze me with their love. On Christmas Day last year I somehow managed to get myself dressed up in a dress I had bought two months earlier for the Christmas I planned to spend in Michigan and laid on the couch as they included me in their Christmas festivities. Their little blue eyed boy, my beautiful mystery of a student who became my beautiful gift of so much more, sat on my lap and opened gifts with me. I had a family and love, and I learned that actions tell more about a person than words ever could.

This Christmas I miss my dear second family in Virginia, but was blessed to be with my family in Michigan. On Saturday my mother's family all gathered for the first time in two years. I was nervous, because it was the first time any of them would be interacting with me since I had gained wheels and I was afraid I would be treated differently because of it. More than anything, I just wanted to be seen as me. I had a wonderful time and for the most part I was accepted with grace and love. So much has changed in the dynamics of our family since I have grown up, and I treasure my family more than ever. There were a few issues where it was clear through actions that all of the words in the world were meaningless, but I have decided that is neither my fault nor my flaw.

I loved watching the little ones run around, open their presents, and just be kids running wild in celebration. Words spoken, and unspoken but communicated through actions, let me know that I am still very much a part of the family. Our annual tradition of the wrapping paper fight was especially well done this year, with some strategy and team work involved.

More than the gifts, or the lights on the tree, for me it was about the Christmas presence - truly being there, truly choosing to offer your heart to one another, and loving beyond any differences. The presence of the gift of peace and hope and forgiveness and love.
Posted by Bethany at 12:44 PM
3 comments:
Anonymous
December 28, 2009 at 10:53 PM

A wrapping paper fight?! Excellent! Might have to make that a tradition around here next year.

Ah, but you DO write well, Bethany. Such warmth and honesty in your words. Can almost feel the heat emanating from the screne.
Barbara


Stacey,momof 2
December 29, 2009 at 2:20 PM

I wish I could figure out the part -- " There were a few issues where it was clear through actions that all of the words in the world were meaningless, but I have decided that is neither my fault nor my flaw."

I constantly struggle with -- how to be me-- mom,wife,sister,cousin ect,-- along with letting go of the past-- It is a challenge to not let my elders (parents) see me as who I am -- not who they see me as.

Your writing is profound in a way that I can't explain... it's full of emotion and honesty-- I even like the melodramic stuff... :)

only good things to come this New Year!


Bethany
December 29, 2009 at 2:57 PM

"There were a few issues where it was clear through actions that all of the words in the world were meaningless, but I have decided that is neither my fault nor my flaw" - this refers to a reaction from a person to having to make accommodations because of my now using a wheelchair and having more health issues. Their actions clearly communicated their message regardless of the standard rote phrases of "its fine" and "whatever". But I decided that the issue was not my fault, I would not allow myself to feel like I am anything less because of it, and if there is a flaw it is not mine to claim. :) Family dynamics are complicated like that.
Growing up I always tried to fill the role that others expected me to be in order to please them, but slowly I came to this place where I am driven to live my life to the fullest and I can't do that if I am living it for everyone else. I can't waste time worrying about becoming what someone expects or desires, or feeling badly if I miss the mark because I have too many other things that are way more important. But it took me a long time to get there. :) So I totally understand!!!
Oh, and the wrapping paper fight is a tradition from before I was born and is a Christmas highlight!! Highly recommended!! Even my 2 1/2 year old cousin was right in the middle of the action!


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Job 8:21

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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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