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

My Christmas List

11:07 PM


Dear Santa,
I am too old to believe in you, yet I believe in your spirit of giving and reaching out to others and wishes and dreams. Thus I wanted to send you my Christmas list for this year. I wish:

1. That the millions of children abused, neglected, and trafficked as merchandise would find a safe haven
2. That no one should have to go to bed hungry because there was not enough to eat
3. That we would stop fighting over religions whose foundational principle is supposed to be love
4. For peace so children may grow up without fear and in safety
5. That all people will be treated with dignity and respect regardless of disability or ability
6. That the world would take the time to remember what Christmas is supposed to be about
7. For new beginnings and the strength I need to do what I wish to do
8.  That we would learn from the senseless murder of our children that we need to radically change policies to protect our children
9. That every orphan will find a forever family and be claimed
10. To find a way to return to the one job I ever loved

Sorry I did not leave you milk and cookies. The cookies are in the container on the kitchen counter and the milk is in the fridge. This is a do it yourself household.

Love,
Bethany

P.S. I am still waiting for that hippopotamus

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Share a Little Love

11:44 PM
I have been very upset by the tragedy in Connecticut, especially as a teacher who drilled with little kids repeatedly for this situation never imagining it could be real. Had this happened when and where I was teaching, I do not know how I would have kept all of my children safe. I know there is nothing I can do to help those who are grieving, but I can do something positive to help overcome the evil.
So when I was at Target to pick up yet more medication, I purchased a package of 5 gift cards and put $5 on each one. I then instructed the pharmacist to give one to each of the next 5 customers. She kept asking me if I was sure and I tried to explain my reasons. So five people who are also in a position of needing to spend money on medication each received a little gift. I wish it could have been more, but an unexpected gift is always welcome.
I did not change the world, I did not undo what has been done, but I did look at the darkness and reclaim some of the light.
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A prayer

12:55 AM


Dear Lord,

I have so many questions for you. The problem is that I don't think I get to receive the answers while I am here on earth. Today 20 parents sent 20 children off to school with the excitement of break coming and the promise of a new day. Tonight 20 sets of parents are not tucking their children in to bed, or reading just one more story or getting a glass of water. There are 20 children missing tonight from their families, their friends, their community. I realise that they are with you now, but the hole they have left behind is huge. The grief is not contained to these families or this community but spreads across a nation. In watching the events I kept thinking that this could have just as easily happened at my school when I was a teacher, those could be my kids not going home, those could be my coworkers and friends murdered.
Lord we need to find a way to prevent and to end these horrendous acts of violence. Somehow our society has formed in such a way that violence goes unchecked. I am sure in the days to come there will be a litany of "warning signs" people see now looking back but we need to find a way to see them in the first place. This has to stop.
I pray, Lord, that you comfort the grieving tonight and wrap them in a blanket of your peace which extends beyond all understanding. Hold them close and dry their tears. You know every tear they will ever cry. Be with the little ones who were witnesses to this horror, that they will achieve peace and healing. For the first responders and the police departments I pray for comfort for the officers who have to work this crime scene and see things no one should see. I pray for our nation, as we have fallen so far.
Thank you for the fact that I know when the children were being shot I know you were there with them. Thank you for the gifts of hope and peace and healing. Thank you for every child who walked out of the school and for the lives of every child who did not. Their memory will live on.
Lord, deliver us from evil.
Amen.
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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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