And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.
Showing posts with label Children. Show all posts

And The Children Shall Lead Them

1:36 AM





I was waiting in line to pay a small fortune for my new KAFO leg braces when I felt a small hand pulling inquisitively at my wheelchair. Before I could turn around, a horrified sounding adult snatched the wee little hand away and admonished loudly "Avery, NO! Don't touch that!" Personally I like it when children are inquisitive about my wheelchair and braces and assorted accessories, so I was a little taken by surprise by the harshness of the mother's reaction. I turned slowly around and caught the deep brown eyes of a child no more than two caught between wide eyed wonder and confusion.

With a truly joyful smile on my face I stared at his Tom Sawyer imp of a face and introduced myself with a resounding "Hi!"
My greeting was returned with a bubbling "hi" and then he decided to get brave. Pointing to my wheelchair he asked "Wheels?!?"
"Yes, my chair has wheels on it. The wheels help me go." I then proceeded to do a few basic maneuvers like a spin and a back tilt much to the delight of Avery.
"Chair has wheels!!!"
"Yes, like a bicycle has wheels."
"Chair has wheels. Bicycle has wheels. Go wheels!"

At that point Avery had decided that this whole wheelchair thing was pretty darn cool and had firmly attached himself to the side of my chair just in case I tried to escape without allowing him a test drive. He was so firmly attached that when the office staff offered him a piece of candy from the creepy germ ridden community candy bowl, they asked me for permission instead of his mother. I quickly cleared up the fact that he did not belong to me, even when he opened his mouth wide to show me the partitally chewed orange pumpkin candy to show me that he had "candy" then "'unkin candy".

By the time Avery left, he had thoroughly explored my wheelchair and asked all of the pertinent questions in his two year old mind. I was no longer a "do not touch" but instead a person with a really cool way to get around. He was fascinated by my wheelchair, but once he got his questions answered and figured it out to his satisfaction he was over it (other than really wanting a test drive) and on to talking about more important things like the pumpkin candies he managed to cute his way into and his new shoes. There was no reason in his mind that my using a wheelchair was abnormal - his mother came close to teaching him that lesson, teaching him a fear of those with differences, fostering a sense of prejudice and discrimination that does not naturally exist in children. I love the way children react to my wheelchair, their honesty and their directness. I love how they get to the point, ask their questions, figure out how it works, and then it just becomes a part of their norm for the person and they go on to other more important things.

In the same arena, my six year old niece also amazes me with her total acceptance and the way she interacts with the fact that I am now using a wheelchair. She asks the most amazing, direct and unfiltered questions and I love her raw honesty and desire to learn, to know, to comprehend. She also really enjoys exploring my wheelchair and figurng out how it all works. We still hang out and play together, and I am still her silly Aunt and she is still my Little Bit. When we are out somewhere she tries so hard to be my helper by pushing my chair or by making sure that people get out of my way, but she also loves when I go downhll and we can race one another. In her drawings of me now my wheelchair is always included just as a part of who I am, and this complete acceptance is amazing to me.

These kids are especially amazing because so many adults can not get beyond the wheelchair to see the person that I am, to recognize that there is more than a disability sitting there. Children do not learn to pity those who have disabilities until they are taught to do so, they do not see a "no touch" sign until it is placed for them, they do not fear differences until someone makes them fearful.

**Photo is of the most amazing almost eight year old boy I have ever had the honor of knowing, one who taught me more than I could have ever taught him.
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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

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Creative Victory

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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