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

Holding on to Hope

My "words" that I want to live out with passion this year are faith and hope. Faith includes believing that the Lord will provide in all circumstances exactly what is needed without fail. Hope is the joy that comes from faith, the belief in something more, the intangible that you hold on to when all seems lost. Faith and Hope are meant to be shared, and so I would like to introduce to you two very special little girls that are now my very special little girls.

Meet sweet Miangeda! She is six years old and lives in the mountains of Haiti. She was chosen to be ours by my mother and I as she just captured our hearts. She looks so solemn for such a little thing. I have not yet received the full sponsorship packet for her, but I do know that she loves reading and playing with dolls, and is doing above average in school. Please add this little one to your prayers!

I would like to introduce precious Monique! She is nine, going to be ten in August (her birthday is only 5 days after mine!) and lives on the flatlands of Burkina Faso, one of the poorest countries in Africa. I fell in love with her and can not wait until the day I receive a picture of this sweetheart smiling! I do not have her full sponsorship packet either but I do know that she has few if any toys and instead enjoys playing with boxes. Boxes, it just breaks my heart. She too is doing above average in school despite all obstacles. Please add her to your prayers!!

This is the Bethelehem Child Survival Program in Bory. Haiti. Haiti's maternal mortality rate is 630 per 100,000 while the infant mortality rate is 86 per 1,000. The Child Survival Program provides monthly health screenings for pregnant mothers, a monthly food kit of healthy nourishing food, immunizations and health screenings for infants and young children, education, parental skills training, and job skills training. Please pray for the mothers and children who receive care here.

Yes, I live on a very limited budget. Yes, I could use the money elsewhere. But elsewhere is not where I am called to use it and elsewhere is not going to make a difference in the lives of two beautiful, precious little princesses who already look so weary. Elsewhere is not going to provide immunizations to babies, elsewhere is not going to feed pregnant mothers, elsewhere is not going to educate a community of young mothers on how to meet the needs of their child - simple things like hygeine and avoiding infections to how to read a book together. Elsewhere and Some other time are always going to be there. These children are here, now and they can't wait. I believe that living with passion means giving until it causes sacrifice. I can not change the world, but for now I can change a few lives. God will provide the rest. And I get to share with these little ones the fact that they are in fact true princesses of the Lord, real princesses and instead of being forgotten they were chosen and so loved!! It all comes down to faith and hope!

Darlin... what sweet girls Do you know if I could sew for them? Are you allowed to send them things?
It would be a simple joy to make them some pretty dresses-- or hair bows.-- Something to let them feel pretty and special. Let me know... :) I'll be your worker bee!

Compassion International has very strict guidelines as to what can and can not be sent to a sponsored child. All items must be made of paper or similar products, be no larger than 8 1/2"x11", and be no more than 1/4" thick. I have had to be creative but have gathered together an assortment of goodies to send to the girls ranging from art projects they can do to a ton of stickers to coloring pages to small booklets of mazes and such. My incredibly artistic (went to art school) best friend is making them paper dolls.

Well darn... paper things are not very easy for me... but I'll ask people I know that are good with paper... maybe they can help me give and be crafty!

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.