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

Things that go Pthhhht

11:02 PM

I do not get out of the house as often as I would like for a variety of reasons - the weather (too hot/too cold, storming), the massive amount of energy required to get presentable and then wheel around some where (my arms are growing weaker damn it!), not feeling well, and the lack of a real purpose to go somewhere. Last week I was initiated into the true wheelchair user's club when I encountered yet another reason for not leaving the house. I was all prepared to go, had my shopping list programmed into my cell phone (what? I am more likely to lose a piece of paper than my cell phone! especially because I paid for the cell phone!), wrestled shoes on over my contorted feet (no botox this round so everything is tight as tight can be), and even managed to do something with my massive mess of hair (I am growing it out to donate and that is the only reason I have not taken scissors to it yet - it is much to thick and curly and snarly to grow long ever again). Then I sat down in my wheelchair and I was going nowhere fast. Okay, so I tend to go nowhere fast on a regular basis, but this time I had a reason. The left wheel was as flat as could be. It had been a long time since the air was checked and added to the tires and a few weeks since I had last gotten out of the house (I know, I am pathetic!). I think the bumping down the flights of stairs at the GI appointment encouraged some air to escape faster than my normal escapes from curbs and bumps. So I was stuck and like the awesome planner I am, I do not have an air pump/compressor. After some phone calls and cursing of Nessarose (the wheelchair), it was decided that the next day my brother would take my mom and the two wheels to the gas station to get air put in them. Thank God my wheels come on and off of the chair! I can only imagine what it looked like to see two people each holding just a fancy wheel walking out of the apartment complex or standing around the air compressor at the gas station. Someone probably thought that they forgot part of the bike when they stole it! The good news is that I am now back up to full pressures in both tires and it is holding steady (I check daily because I am paranoid). And for my birthday I am going to harass my dad for an air compressor. Cause nothing says loving like the gift of hot air!!

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A Budding Grafitti Artist

12:41 AM

Kevin was a child whose developmental delays were clearly a result of his home environment and not a result of any intrinsic disability. He, and thus we, reported abuse on numoerous occasions but no one listens to a three year old boy with speech delays and a fear of strangers. Kevin was prone to extreme rage which he could not identify nor figure out on his own how to regulate (this was an IEP goal for at least two years). He also lacked impulse control. One day we had been coloring with markers for art and I had put the bucket of markers out of general reach, but still within reach of a climbing child I would discover. The children were playing nicely in centers when all of a sudden Chrissie came running up to me and announced "Kevin is drawing on the walls!" I looked and sure enough, Kevin was using a brilliant blue marker to decorate the imaginative play area, drawing on the walls and the table and the play kitchen and a few dolls. Calling him over, I asked him what he was doing. With an angelic face he answered "Graffiti." 
"Kevin, we do not have graffiti in my classroom. We respect our things."
"I sorry."
"I am glad that you are sorry but that was a bad choice. What happens when we make bad choices?"
"[things] we don't like."
"Now you are going to have to clean up your grafitti,"

I filled a small bucket with soapy water and plopped in a sponge. I then supervised as Kevin scrubbed away every mark of his graffiti. The problem was he seemed to be having fun cleaning, so I decided that we would extend our grafitti removal project. So with bucket in hand we went to the two other special education classes and did some more cleaning until it was not fun anymore. Each teacher also played along, acting horrified that Kevin would write graffiti on his classroom walls and toys and talking about what a bad choice that was. When we walked back to our classroom, Kevin barely cleared the ground with the bucket he was lugging.
"Kevin, do we do graffiti at school?"
"No ma'am!"
"What happens if you do graffiti?"
" You clean it. And clean more."
"So are you going to draw on my walls again?"
"No Ma'am!"

After that day Kevin turned into a marker monitor, making sure they all had their lids on and that none left the tables. He always reminded me to put them away in the cupboard after we used them. And he never wrote on anything other than paper and appropriate materials again. :)
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My redundant life

4:04 PM

It has been a while since I have written because my life is rather lacking in the excitement value. Each day seems a lot like the next: lather, rinse, repeat as necessary. There are slight variations - today I am laying on the couch in my blue and pink plaid pajamas, yesterday I laid on the couch in my colorful owl pajamas (I love owls). I may switch up what kind of cereal I have for which meal, and there was the huge moment when I had corn on the cob instead. We lost spring to a month that pretended to be winter and now to a month pretending to be summer. It has been over 90 degrees on multiple days already - I live in the North for a reason! I did my dues in the South! So I have been trying out different ways to start/write this post:

It was a dark and story night... Um, isn't every night dark? And while we have received enough rain for me to call Lowe's and ask if they had Gopher bark in stock, we have been blessed to avoid the storms. Scratch that one.

Once upon a time...  Oh no! This almost always guarantees a prince, and the last prince charming I met was anything but charming in the end. If that was a prince, I am now accepting dates from frogs.

Long, long ago and far far away...Lets see here. This delightful disorder has decided to turn my memory into a very short term process so that kills long, long ago. And far away? I don't think that Target counts as far, far away.

In a galaxy far away... I may have my head in the clouds a lot of the time, but the rest of me resides solidly on Earth. Besides, I would probably get starship sick.

There once was a man from Nantucket...Too predictable.

There was an old lady who swallowed a fly...  One, I have accidentally swallowed bugs that have blown into my mouth and it is retched disgusting. Two, there is way too much mean on that list for my stomach to handle and I would be down for the count long before the horse.

Old MacDonald Had a Farm... I have cleaned up enough poop in my life between my niece and my students. We are not adding animals into the mix!

This is the house that Jack built...  Lets see here...this is the stain where I spilled the coffee on the top of the pajamas I wore while lying on the couch that needs rebuilt?

OK, that is all of the "creative" introductions I can think of and not a single one works. So I guess I am out of ideas for today, but I will try again this week. Perhaps I will bring out some of my favorite stories of my children from teaching. "There once was a teacher..."
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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.