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

Same, not Different

This past weekend was the family Christmas activities for my father's family. A tradition of sorts has been established that each year the families gather at a hotel that has a swimming pool (easy entertainment for the kids grown and not) for the weekend. We have a big family meal on one day and then a smaller get together the other day for presents and such. This year the chosen hotel was just one town away from where I live, so the original plan was for me to spend the day with everyone and come back home at night. However, my stepsister's husband had to work and so she invited me to join her and her kids in their hotel room. It was a wonderful weekend where my braces and wheelchair and crutches were insignificant, where no one treated me any different and where I could just be a part of a family celebration. It was just assumed that I would be included rather than looking at obstacles and thinking it would be too much work. I have not always been close to my stepsister and brother, or to my stepmom, especially when I was growing up but they have genuinely formed a family that cares about me and accepts me and is protective of me without limiting me and that just gets that in spite of all the medical stuff I am still Bethany. I thoroughly enjoyed being able to swim so much, as in water I can move my muscles so much easier than I can in any other situation. I do cheat and use a flotation belt because I struggle to maintain balance and to hold my legs up when swimming, but the difference in motion is amazing. In the pool I could participate in all of the fooling around and playing without struggling with my wheelchair. I was able to play with my nieces in an environment that was without barriers. On Saturday evening, the spa was cooler than usual so I was able to safely sit in the warm water and place my feet in front of one of the jets for what was an incredible "massage" that helped to loosen up my muscles.
Two funny stories. The first involves being completely and inappropriately dressed for an occasion. At the hotel, the swimming pool was directly next to a large conference room (actually it connected through sliding glass doors and could be opened up so the pool and room were connected). As we were swimming Saturday morning, complete with children splashing and jumping into the pool and shouting and being kids (and some adult males being kids with them), we discovered that a funeral memorial service was being held in that room directly next door. Now, not only was it bad planning to place a somber event next to the pool the weekend before Christmas but the only way from the pool back to our room was either to go up a flight of stairs and across the upper floor then down a flight of stairs (um, apparently the wheelchair was not a clue to the hotel staff that this plan was not a reasonable option) or to go right through the buffet area for the funeral. So not only did we have to parade soaking wet, in flipflops or little bare feet through the somber set up but my swimsuit cover up? A nice wrap with brightly colored skulls and cross bones all over it. I have now officially crashed a funeral in my swimsuit and a skull and cross bone cover-up.
Second story requires some background knowledge. Last week my stepsister graduated from nursing school. Awesome! My dad and stepmom obviously went out to her graduation. I forgot what day her graduation was and so when I had a toilet emergency on that day I called them to see if they happened to have a plunger I could borrow. As soon as I called, I realized where they were and that from 3 hours away they were not going to be able to help me out. They actually did help me through a call to a friend who lives in the same apartment complex who hunted down a plunger for me, and all it cost me was some embarrassment. So yesterday while we were opening presents my dad and stepmom announced that they had a very special present for me. With a large red and green bow on top and red ribbon curling around it I was presented with a plunger complete with a tag reading "In Case of Emergency". I had to laugh, and everyone who knew the saga laughed along with me. So now when I am asked what I got for Christmas I can proudly say "a plunger!". :)
Tomorrow I am going over to my Mom's to spend Christmas with her and then on Saturday we are going to my Aunt's house for Christmas with my Mom's family. I am more nervous about that event because no one from her family has seen me or interacted with me in person since I became sick with whatever this dystonia/progressive spastic paraparesis/unknown syndrome is. I just want people to treat me like me and not be uncomfortable or all weird because of the chair and the changes in my life. But I am so excited to be celebrating Christmas with far greater health than last year, and not desperately ill and an 11 day inpatient stay right up until late on December 23. And I can even eat all of the Holiday foods this year too!! What a difference a year makes!! I am so blessed!

Loved reading this post... gosh I get such smiles from you- a beautiful handmade card, a Christmas letter --
:) thanks!

Me, too! Loved the cards and letters, Bethany and Stacey! I will send something back - to both of you! Does a (blog)Mom's heart good to read about you having a good time with family during the holidays!

We are enjoying time with CollegeSon home. I'm just rewarding myself tonight visiting my friends after FINALLY posting again.

Blessed Merry Christmas! Barbara

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.