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

Traditions: Teaching the Next Generation

6:34 PM

We have a long standing family tradition of wrapping paper fights at our family Christmas get together. It was in existence as far back as I can remember. We have done our best to teach the next generation, and it seems we have taught them well indeed. The littlest family member took the opening shot this year!
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My Grown Up Christmas List

11:53 AM

Dear Santa Claus, Kris Kringle, Christkindl, St. Nicholas, Sinterklaas, Mikulas, San Nicolo, Pierre Noel, Father Christmas,

I am quite certain that I am trending more towards that naughty list than the nice list, especially if swearing and sarcasm are taken into consideration, but I decided to take my chances and write you my grown up Christmas list. If I have been too naughty, instead of bringing coal could you please deliver the equivalent amount in barrels of crude oil - they trade better on the open market. If I have tipped over into the nice category, below are some suggestions of things that would be really great to receive this year although they may be a little challenging to wrap up and top with a bow, but that is why you have the Elves working in your sweatshops year round. Don't worry, there are no labor laws for Elves yet so you are in the clear.

1) I would like a hippopotamous for Christmas. Preferably a baby one named Ethel. 
2) I would like a can of Stupid-B-Gone to be used in situations where ignorance can not be corrected by education.
3) I would like snow and ice tires for my wheelchair. You know about snow. Now try steering on that crud with thin wheelchair wheels, propelled by metal push rims in subzero windchills.
4) I would like for my buddies and kids with special needs to be more than tolerated in society but to be accepted and appreciated. I tolerate lima beans when I am served them, but that certainly is different than accepting an offer of a new food for dinner and appreciating a homemade three layer birthday cake with gorgeous decorations. 
4. I would like my body weight in chocolate. All organic and grown by regional farmers, in an assortment of flavors including dark chocolate, milk chocolate, white chocolate, and truffles. 
5. I would like for money and health care and food to be more equally distributed in this world so that no one dies because of hunger or a preventable and easily treated disease. No child should go to bed hungry, wondering if and when they will eat again and where there is such a thing as clean water of what a home is.
6. I would like a disco light for underneath my wheelchair because if people are going to stare I want to rock it out. 
7. I would like an end to killing one another in the name of God. If we all claim our God is a God of peace and love, how can we then kill in His name?
8. I would like to have enough of everything, but never so much that I forget to appreciate all that I have. Enough love, enough joy, enough peace, enough hope, enough grace, enough mercy, enough providence, enough success, enough trials, enough learning, enough friendship, enough miracles, enough laughter, enough memories. I would like to never take forgranted all that I have been given.
9. I would like enough for all of my loved ones, my friends and family, those who share this journey with me and provide me with support and laughter and encouragement. 
10. I would like a diagnosis if you can find one of those laying around.

Thank you!
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The Christmas Menagerie: A Well Worn Tradition

11:26 PM
 Note: This is NOT my Nativity scene. Mine is way more rough around the edges than that. Plus, what is up with Jesus being blonde and having blue eyes? Seriously!!

In an old cardboard box that replaced the shoe box used up until last year when it finally wore through the bottom I keep one of my familie's most precious Christmas traditions. It contains the assorted pieces of a nativity scene that has been my responsibility to arrange for display and tend to since I was about three or four years old. I took this responsibility very seriously as a child and often spent hours arranging, then rearranging, then acting out the scene before rearranging yet again the staging of the nativity. But this cardboard box nativity is special. It is absolutely, undeniably, certifiably one of a kind. It is not so much one set as the accumulated pieces and parts of numerous old sets combined together as parts and pieces went missing. So Mary and Joseph are from one old, handcrafted set but Baby Jesus had to be replaced last year after suffering a severe compound fracture to his arm and some skull lacerations when making a dive out of the manger. We have four wisemen instead of the traditional three, because those are how many are left over from all of the sets and I can not choose one to leave out. The wise men are in various scale sizes, making one look like he has a serious growth hormone problem and another as if he is from the same tribe as Goliath. I figure my wise men bring Gold, Frankensence, Myrrh, and the one thing every new parent needs - free diapers! Then there is one shepherd with a sheep and a free standing sheep of a slightly different shade of white paint...he's been rolling around in the mud. For the ambiance there is a single cow remaining and a single donkey (well, we call it a donkey but it could be a horse I guess...who would invite an Ass to the birth of Jesus?). The angel is missing the gold from her wings and her halo is chipped and dinged. Finally, there is a so-not-proportional bright green wooden pine tree with snow that I made when I was about eight years old at Church and insisted must join in the merriment. My nativity has some character to it, it has been around the block and been knocked around by life, it has been pieced together from pieces and parts that otherwise would have been thrown away, and it has been given a place of great honor every year. I love the imperfections and would have no idea how to set up a perfect, everything matches, nothing is damaged nativity. Just like I love the imperfections in my life and would have no idea how to live an absolutely perfect, unscarred, unmarred, undamaged life. In both the nativity and my life, the quirks, the marks from wear and love and from little hands holding tight, the collection of pieces that failed to fit in  and so were supposed to be discarded, the journeys from home to home, the ragtag menagerie is beautiful in my eyes. Creating that magical scene is something I look forward to every year, especially if I get ahold of some spray on snow, glitter, and straw/hay! Although this year I hope we can make it through the season without any serious trama, although I do have that spare wise man who can step in as an understudy.
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Bah Humbug!

8:25 PM

Christmas is usually one of my favorite times of year, with the glittering lights and the decorations and the excitement about giving to others and the celebration of Christ's birth. This year, not so much. I am definitely not feeling the Christmas Spirit. Last year I was all about everything holiday because the year before I had been so sick that I missed out on the entire holiday season - every holiday from Halloween to Valentine's day. This year I am at a different point in dealing with the massive changes in my life - if we were to refer to the Kubler Ross stages of grieving I am alternating between angry and depressed with days of acceptance. I really want my old life back - if that could arrive under my Christmas tree neatly wrapped in a package and tied with a bow I would be the happiest person on Earth come Christmas morning. At first I tried to force myself to go through the motions and engage in the traditions and make myself feel happy whether I wanted to or not. Yeah, that went as well as it sounds. So now I have given myself permission to feel however I feel and not feel ashamed or guilty about it. There will be no homemade christmas cards this year, and it is debatable whether I will send out any Christmas cards. I have not listened to a single Christmas Carol, other than those playing in stores, and I may choose to keep it that way or I may rock out to Sugarland's Gold and Green. I am putting up a small Christmas tree this year but it will be a low jey event and that will be about the extent of the decorations. It is going to be a low key, low pressure, take it as it comes, celebrate the things that really matter Christmas. And this year I am okay with that.
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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.