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

Betwixt

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Betwixt one year and another, at the dusk of one expanse and the dawn of the next, the ending of a passage and the departure on a new voyage is time for both reflection back and anticipation of the new.

Reflections:
This past year has been filled with events and circumstances I never could have imagined. In January when I traveled from Virginia to Michigan, it was for a 3 month recovery period from the mystery illness that had so sickened me and then I was going to return to work. No one could have conceived of the fact that at the end of the year I would be considered disabled, reliant upon a wheelchair, and diagnosed with a yet to be identified progressive neurological disorder. Sometimes I think it is better that we do not know things in advance but rather find them out one day at a time. I never imagined that I would be "allowed to resign" from the job I loved most in the world, but be proud of the reasons that I was given the options of resigning or being fired. Beyond excessive absences during my time under the Family Medical Leave Act (illegal, but who says the government plays by their own rules?), I was disciplined for standing up for the rights of my children for equal treatment, dignity, and an education. If that makes me a troublemaker, then I would rather lose my job for what I know is right than keep it by being silent and allowing children to be treated as side show displays (I fought against having each class in the school come into my classroom to "meet" (stare at) my kids and ask whatever questions they wanted in front of my kids- my kids are not teaching tools, they are not a circus side show, they are not an exhibit) and receiving babysitting rather than an education. Of course, now I could not physically do the job anyway, but I am still proud that my principles stood. And they stood to the end when I assisted two families in fighting for proper IEPs and placements and services at the end of the school year as I was still officially the classroom teacher through July 1. E mail is a wonder invention indeed. I never would have imagined that this year, amidst all of the medical mayhem, I would fall in love with someone nor that I would end up walking away from him. Not that many years ago I would have been so eager to become what anyone wanted me to be that to walk away would be unthinkable. But when "Prince not-so-charming" refused to promise that he would not use my disability against me in our relationship (AKA I told him I did not care if he later decided to break things off because he decided he hated redheads but I needed to know he would never use the excuse of my illness because I was totally honest with him) I instantly realized I deserved so much better. It is a pretty shallow man who can not agree to not use my illness or disability against me in a relationship and I don't do shallow. I never would have imagined that I would come to appreciate my wheelchair as a tool for freedom and independence instead of cursing it and detesting it. Now I realize that I am more handicapped when I use my crutches or a walker because I have to rely on other people to do everything for me - carry things, pour me a drink, move objects out of my way- than I am when I use my wheelchair and can be independent. I never imagined the beauty I would discover along this winding and rocky detour in life, beauty I would never have known had life not veered off the course it was on not so long ago.
This year's greatest moments include the first time I was able to go to a restaurant, order regular food, and eat it without gagging, retching, or choking. I will never take the simple act of eating for granted again. When I moved into my own apartment, I regained my sense of self and independence and felt a victory over this disorder that has tried but failed to define me and restrain me. Ten incredible days spent with the most amazing friends in Virginia that reminded me to my soul that I am still me, and that also overfilled my heart with the joys of cuteness and the magic of a one of a kind treasure of a boy. Discovering the freedom of swimming and the ability of water to provide my body with a place where movement is easier and my muscles are less inhibited was magical. Watching my Little Bit dance and live her life as a musical never fails to delight me and fill the part of my heart she claimed 5 years ago. Capturing a sales clerk in a verbal headlock when he ignored me and went to serve a male customer who had just walked up to the counter by asking him "Are you ignoring me because I am female or because I am in a wheelchair?" and watching his reaction (my favorite of many really good quick witted comments this year). Dancing in my living room and feeling the same joy of movement, the same thrill of expression, the same energy and silliness on wheels as I ever did on feet.

Anticipation
I have a little black velvet bag that I carry with me wherever I go. It is in whatever backpack or purse happens to be hanging on the back of my wheelchair at any given time, and has been for 3 months now. Inside of the bag are 5 small stones each inscribed with a word. They are "wishing stones", positive words given a physical form so they can be held and felt and clung to when necessary. They are my reminder that the abstract is just as real as the concrete, that just because something like faith does not have a solid form does not render it nonexistent. So I am going to take each of these solid words and use them to write an anticipation, not a resolution but more of a hope or a purpose or a vision for the upcoming year.

Wish There is nothing more properly the language of the heart than a wish. Robert South
Wishes are the fires that keep the stars burning at night. They are the longings of the heart that we may or may not be brave enough to put into words. It is my desire to always have enough wishes to light up the night sky and to have the courage to declare them one by one. Wishes of peace, of joy, of healing, of love, of miracles, of possibilities. Wishes are prayers with fancy feathers.

Create It is better to create than to learn. Creating is the essence of life! Julius Caesar
Life provides you with a certain framework in which you must operate. Whether this framework is a limitation or a canvass for creativity is determined not by life but by how we respond to it, what we choose to create. We write our own narratives, paint our own backdrops, and frame our own snapshots. I seek to write a narrative of peace and joy and gratitude, I seek to paint a backdrop of beauty, and I seek to frame the snapshots of my life in love and laughter. I also know that through creation our true self can be expressed and communicated. This coming year I want to devote more of my time to creating- creating memories, creating acts of love, creating expressions of myself through writing or art, creating the person I seek to be.

Strength One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity. Albert Schweitzer 
For so long I confused strength with the ability to live without needing help from anyone. That was not strength, that was pride and I learned that lesson in a very painful manner. Strength is having the world fall down around you and wanting to surrender to the chaos, but choosing to pick the pieces back up and put them back together again. Strength is a choice. You can choose to give up, to give in, to become defined by the obstacle or you can claim your ground and hold yourself as something more. The choices may be minute by minute, hour by hour, day by day and to the outside world they may appear insignificant but to the warrior they are triumphs. It is my longing to be strong enough to never allow the world to define who I am or what I am, to be strong enough to never surrender my passions in life, but to never confuse strength and pride for it takes great strength to acknowledge when you need help.

Magic Genius is another word for magic, and the whole point of magic is that it is inexplicable. Margot Fonteyn

Magic is living with a sense of wonderment and belief that there are aspects of life that go beyond our comprehension. It is appreciating the small delights with great joy and living with a heart and mind open to endless possibilities. What some call magic others call miracles. To live with magic is to be fully alive and to be open to all of the wonderment, mystery, excitement, and awe that is life. May I never lose the magic of life, may I never cease to celebrate the glory and wonder of the smallest delights, may I never close my heart or my mind to the awe of that which is life.

Dream Dreams are illustrations from the book your soul is writing about you. Marsha Norman
   
Dreams are our greatest desires in life, our passions given living form, our wishes with flesh and blood. A life without dreams is a life that is not being lived. Dreams are messengers of purpose. Often our greatest dreams reveal our strongest passions and that which will give purpose and meaning to our lives. No dream is too grand nor to small, no dream inconsequential. Dreams nourish the soul and propel us ever forward to seek who we are meant to be. For many months I was afraid to dream, but now I am beginning to feel secure enough to allow myself to dream. I hope to fill my life with dreams that push me to succeed, to seek that which will nurture the purpose and meaning in my life, to nourish my soul and set me aglow with possibilities and belief.
3 comments:

I meant to come back and comment here, too, last night - got distracted.

You bring out my maternal matchmaker instincts, but I am successfully overriding them through shear cognitive willpower. I know you will do fine on your own picking a mate.

You can add more meaning to a bunch of rocks than anyone I know. ;) Love reading you. Barbara


Worried about you. It's been a while.

Be well and hope to see some of your words soon. Barbara


Back again. Sigh. I guess you are using your minimal online time to comment on my blog - wonderful, but how can I reciprocate with no new posts here? Oh, nice new banner! I guess that took some time, too.
Hugs,
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.
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