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

Ripples in the Pond II: The Princess and Her Brother

Until I was born my brother was an only child for six glorious years, six years he likes to tease me as being six of the best years of his life. In my family dark humor and teasing are finely tuned skills for coping and surviving, for making one another laugh in hard times and for showing love. Then I arrived and was not the puppy dog he was really hoping for but a tiny baby that specialized in screaming and makng disgusting messes that no dignified 6 year old boy wanted any part of. I invaded his territory, but he was willing to negotiate. However, before negotiations could be undertaken (afterall, I was still drooling as my primary mode of communication beyond screaming and the occasional smile), I turned his world upside down. Suddenly I was the focus of the attention of not just his parents but what have seemed like everyone in his world. In the middle of the night, as he slept through the alarms and sirens, his parents might disappear with his baby sister and he would wake up in the morning to find a family friend or grandparent there instead of his parents who tucked him in the night before. At school he may sit in the office waiting and waiting for someone to pick him up, not knowing that we were again at the hospital and arrangements for him were being made. His baby sister threw his negotiations out the window and took over the life of his entire family. Even once the apnea ended, everyone was still so protective of me, and there were still so many medical issues that required ongoing medical attention that I was usually the center of attention. It did not help that I was born with the true little girl diva personality and socialized best with adults where I could show off my precocious vocabulary, my established cuteness, and my humor. Instead of me growing up as HIS little sister, he grow up as MY big brother in our community and roles were reversed. When I had to undergo particularly unpleasant medical testing I would receive a reward, usually a book and a stuffed animal, while he received nothing. Fair yet so unfair. Because our mother was also chronically seriously ill, together we had to face the unknown many times. He became my protector, and my safe place during those scary times. When I know he was scared too he never showed it because he wanted to be strong for me. He viewed me as more fragile. He would get me to stop crying and start laughing by having us race to pack suitcases for whosever house we were staying at that time and then doing things like unpacking mine to try to win or tripping me. I always ended up laughing too hard to cry. He was allowed to tease me mercilessly but he would be the first to come to my defense the moment anyone else hurt my feelings or laid a finger on me. I am amazed that he matured without clearly resenting me for all of the extra attention I required, and for the added stress I placed upon our already stressed family. I am proud to say that my brother is now one of the best fathers I know, as well as an incredible paramedic. I can not speak for him as to what it was like being my brother, but I can say that I know it had to be difficult. I know that it had to be frustrating, and confusing, and scary, and lonely at times. I know that even now being my brother is not easy. It is not easy to watch someone you love and want to protect be at the mercy of a disease no one knows how to treat, it is not easy to be unable to do anything to make it better when your attitude in life is to fix things (as a paramedic he fixes things, he is able to help people, he makes a difference), and in my opinion when you share DNA with that person it is probably scary to wonder if any of that mis-spelling ended up in your DNA and is just waiting. I would not trade my brother for anything. He had to go through the same battlegrounds I traversed as a child, and as an adult, just from a different angle, and together we went through the ones for my mother, and I know he is always there for me and that he is proud of his little sister and would do anything for me. I just wish my illnesses and my upside down inside out life had not caused so many waves in his life. I wish I could have spared him the ripples.

I have a big brother also, and may I just say to you I am jealous, I didn't have the relationship that you two shared.
I bet the ripples made both of you stronger,more caring people --
and so for that I Thankful!
I can't imagine that a perfect childhood would be any fun...I don't know anyone who had one... do you?

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.