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

In Wonderland

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* I apologize for the poor quality of the photos in this entry. I forgot my digital camera and had to rely on my cell phone for taking photographs. My cellphone is having issues, but I do not want to replace it until it is thoroughly and officially deceased.*

After much rescheduling and postponements due to medical issues (dysautonomia flat out sucks, there is no pretty way to word it), I was able this week to spend an afternoon in my wonderland. Now from what I understand I am relatively odd in the female world in that I detest shopping for most things. Clothing shopping is torture, grocery shopping is a tedious and dreaded chore, and I am not one to get excited about collecting do-dads and thing-a-ma-jigs to decorate. In fact, I am most happy knowing that if it were necessary I could readily pack all of the belongings that hold importance to me into the trunk/backseat of a car and have no regrets. But there is one kind of shopping, one kind of store in which I can easily spend hours upon hours wandering in wonder and joy. I love their smell, their peacefulness, and their aisle upon aisle of pure magic.


A bookstore is a very dangerous place for me to be unsupervised because there are just so many BOOKS!! How do you ever pick just one?!?! I have my own personal strategy for visiting a bookstore. I first peruse the books on the big displays - the new releases, the big sellers, the mass market successes. Then I explore further. I seek out hidden gems that are tucked away and forgotten about, little treasures without the fanfare.  I spent a good hour just breathing in the smell of new books, touching them, reading their potential, and seeking the ones that pulled at my heart. I visited the classics as I always do, but this time none of them called to me.


Perhaps it is the teacher in me, perhaps it is the child that refuses to grow up, but no visit to a bookstore is complete without spending time exploring the Children's section.

 I flipped through some of my absolute favorites from childhood, and discovered new books that I would love to share with a class full of kids. 


Once I had finally settled on my book....s...okay I confess I ended up buying 4 new books, a new journal in which to keep track of all the books I want to read and all my favorite books, new bookmarks for my new book, and an audiobook, what can I say?!?!? Hello, my name is Bethany and I am addicted to books. Anyway, once I had settled on my books, I went over to the coffee shop where I enjoyed a delicious chocolatey coffee treat and dove in to one of my choices.


I wish I could have spent more time at the bookstore, but I think my bank account is thankful that I had to leave to catch the bus after enjoying my coffee and book for a nice 30 minutes. Otherwise a few more books may have found a new home. ;)
Books are my wonderland, my escape, my journey through the world, my fountain of knowledge, my means of making sense of things that do not make sense. Words are magical to me. I think in words, I understand in words, I express myself in words, I imagine in words, I process in words, I find meaning in words, I discover truth in words. Words can change a life, can shape the future, and can alter history. So books, as the keepers of words, are very potent. I love being surrounded by their strength and beauty and passion. I love the vast knowledge and possibilities and perspectives and truths all waiting to be discovered. I love being surrounded by so much more than myself.

This post promotes a similar addiction in me. We were at a book store on Sunday. Right. You mentioned smell. Ahem. Love your words.


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.