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

The Ripples in a Pond Part I

When you throw a stone into a still pond, it does not just experience its own flight and crash landing into a body of water where it slowly travels through the body of water. The moment it breaks the surface of the body of water the entire pond is changed as ripples spread outward from the point of contact. In ways microscopic or visible, the pond will never be exactly the same again for having been touched by the stone and the ripples spread out further than it seems possible.
In many ways, based upon my experiences growing up, having a child with serious chronic illnesses is like throwing stones into a pond. Some of the effects are clearly visible, like ripples on the water, but others exist below the surface. Some are beautiful like the sunlight dancing on the gentle swaying water, and other are darker like silty mud rising from the bottom and swirling in the once clear water. One thing is clear though, and that is that the ripple effects extend farther than most people would imagine and in ways many would never even consider.
My family was the pond, and I was the one who seemed to constantly be attracting stones to our water. Beginning in infancy (see previous post about The Battlefield), I was medically complex and required a high level of care. For me, this was my normal because I had known no other life, but it caused ripples in the pond of my family. Across the years of my childhood and into my adulthood stones fell, and yet it was not until relatively recently that I truly became introspective and aware enough to begin to see how the ripples and paths of these stones impacted my entire family. I had believed that because it was just a part of my life that I accepted and did not concern myself too much with (until this latest illness that changed the rules of the game), they were the same way. A little egocentric thinking there, which is unusual for me.
I want to spend a few posts over the next week or two looking at the impact, positive and negative, the challenges and rewards that living with and raising and being a part of a family with a child who had (and an adult who has) significant medical needs brought/brings to my family. We are only one family, but we are one family that has been on a long journey!

Okya... tell us more about the new picture-- is that you and your brother from long ago?

Heh. I was wondering the same thing, Stacey, but I don't think Dora was around when Bethany was a kid. No?

LOVE the stone-ripple analogy. Deep in my archives (well in the first six months of the blog in 2007) I did a post titled 'Increments' using the symbolism of a rippling-drop into the water.


The picture is of my two nieces from last summer. I started it by telling Little Bit (the smaller of the two - I call her Little Bit because ever since infancy she has had such a HUGE attitude for such a little bitty thing) refused to put on her night-time pull up so I told her I was going to wear it as a hat. She then put it on correctly, without a fight, but we decided the entire family needed new hats. I have pictures of my brother and sister in law, both nieces, and myself wearing pull up hats. :) Little Bit starts Kindergarten this fall and her sister Princess is starting 5th grade. They agree with my philosophy to throw convention out the window and just have fun. When I used to watch them we would go puddle jumping (finding mud puddles to jump in on purpose) and we had a wicked cool shaving cream fight that started with sensory play for Little Bit (she is typically developing but I like to give little kids all sorts of fun experiences). Little Bit is trying to transition herself from Dora because someone told her it was for little kids and she is now a big kid, so she is working her way into Disney princesses but still secretly loves Dora. :)

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.