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

Party of Seven

Yesterday for Easter my brother and his crew (my sister in law, my nephew who is thirteen and thus too cool for everything, my niece who is 11 going on 16, and my niece Little Bit who is blissfully 5 years old) picked me up and we headed up to where my mom lives to all go out to lunch.I took my camera with me but somehow managed to miss pictures of my mom, my brother, and my nephew. I will get them soon!!! We went to Chilis where out group managed to consume what must have been the equivalent of an entire pig's worth of ribs and created the carnivore sundae pictured below.
I was highly impressed by the ability of my unfairly skinny niece and nephew to consume food - my nephew cleared a steak meal and my niece cleared an entire whole rack of ribs. And both got dessert!! Little bit was not far behind them clearing her plate of kids mac and cheese, half her fries, and an ungodly amount of ice cream and some cake from a dessert that could have easily fed four. Afterwords I think we all felt a little full.
Little Bit was just thrilled to show off her Easter dress and insisted that her arms were not cold, nor her bare legs and feet. I was the same way as a kid, so I really can not tease her too much. She is getting so big - not the tiny little baby I took care of for two years!!

I loved this picture so I had to play around with it. I transferred it to black and white with just her Easter dress and Princess Barbie sunglasses left in color. The Princess Barbie sunglasses were a critical part of the outfit as she is SO into princesses and Barbie dolls now. Dora the explorer is losing her glory and Barbie is becoming the best thing on earth. She is growing up!!
On the way home Little Bit was writing and drawing on a note pad and drew the most precious picture for me. I really wish my scanner was not having a temper tantrum right now because I would love to post the picture here. I will try to coax the scanner into working again later, but I think that feature may just be DOA - the printer has been moved from Michigan to Virginia to another house in Virginia and back to Michigan so I don't think it owes me anything. She drew a picture of herself telling me "I love you" and me telling her "I love you too Mallory". Cute, right? But the best part is that she drew me in my wheelchair without any hesitation or fuss, just accepting that it is a part of my life. God I love that kid and I love her view of the world and the way she takes things in, asks questions, and when she is satisfied accepts differences and is good with them. If only adults could learn from kids!!

Love your family. Too. She is VERY cute. Tell her like her dress, too.

If only kids did not learn bad world views from (some) adults. 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.