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

Memories and Moments

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Lately I have been reflecting backwards on just how much my life has changed, and I realized that there are big things I miss from my "before" life but also a lot of little things. So I decided to put together a list of the things that I miss the most. I also decided that I would then complement that list by listing all of the things that I truly appreciate that have happened in the "after" life.

Memories
* Driving a car
* Hiking
* Reaching things on higher shelves without having to ask for help
* Being able to wear low socks (AFO braces require high, basically knee socks underneath them)
* Being able to buy shoes easily (AFOs do not fit in hardly any shoes - thus I rock converse with dresses)
* Being able to attend concerts (I lost that to the dysautonomia)
* Being able to take a shower instead of a bath
* Painting my toe nails in less than a two hour process
* Carrying a purse instead of a backpack
* Not looking up to everyone (I have a great view of belt buckles and backsides)
* Teaching
* Swimming without a flotation device
* Being able to break a glass and not have to call someone to come clean it up for me so I don't pop a wheelchair tire
* Wearing my polka dot rainboots and splashing in puddles
* Living in Virginia
* Sitting in a chair without strapping my feet down
* Not glowing in the dark from countless MRIs, CTs, Xrays, and other medical tests

Appreciations
* I totally skip the line at airport security and am through in about 15 minutes total no matter what
* I can run into people who annoy me and then play innocent and no one yells at the chick in the wheelchair
* I am saving a ton of money not having to pay for gas
* I have learned to truly live in the moment because nothing is guaranteed and to appreciate all I have as I am so blessed
* I have some of the most amazing friends and family in the world who have walked this journey with me and never let me fall so low that I could not get up again (Steph, you are an angel)
* God has a great sense of humor
* Laughter can do amazing things (Steph, you made me laugh in a place and time I thought I would never laugh - the tree and the words "hang in there"...priceless)
* Doing the right thing is always worth the cost
* I have a totally new appreciation and perspective on what my kids go through and all that is asked of them, and they are now my heroes even more than before if that is possible
* Every time I was at my weakest God sent me just the person I needed to be there for me and offer me the words and support I needed - a nurse at PWH, a dietician at GWUH, my home healthcare nurse, my amazing friends, prince not so charming
* I have learned to dance a new way to the music of my heart
* Watching how Little Bit sees me, how she asks questions but sees me as just the same Aunt Beth has been the most priceless treasure - my leg muscles may not work so well anymore but I am still her silly Aunt Beth and she loves "helping" by pushing me (even if she can not quite see over the wheelchair to steer!)
* Relearning to eat all over again has taught me to appreciate so many little things that seem natural and go unnoticed until they become a struggle - I appreciate each breath I take, each time I can coordinate movement, each sensation I feel, each swallow, each heartbeat, each taste of food not pureed or from gerber!
* Knowing that God has been with me all of the way and that He has plans to turn what to many would seem a disaster into something beautiful to glorify him!
Posted by Bethany at 10:59 PM
3 comments:
Anonymous
March 2, 2010 at 7:16 PM

I like how you call now "after" life.

Reading your blog helps me be more balanced, appreciative of now, too. Thanks, Barbara


Bethany
March 2, 2010 at 11:06 PM

LOL Okay, so the wording on Before and After in regards to life before and after the massive changes came out a little wrong with the phrase "after"life. :)


Anonymous
March 5, 2010 at 2:21 PM

No, no, no - I REALLY like it!


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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

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Creative Victory

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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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