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

Common Hope

6:43 PM


I sponsor children with several different organizations. One of them, Common Hope, is striving to make changes for children living in Guatemala. It provides funds for education, health care, food, and other needs that a family may have. They are attempting to obtain 21 sponsorships by June 21, the start of summer, for children in San Miguel Milpas Altas. These children are in fifth and sixth grade, and many of them are already more educated than their parents. Many children are pulled out of school to assist in farm work and to help the family financially. There is also the fact that currently there is no high school in San Miguel and children seeking a high school education must go to Antigua or Guatemala City. This is something that Common Hope is trying to change. These children desperately want an education, something we all take for granted. If you have the ability, please consider offering one of these children the gift of hope and knowledge. Spark Hope!
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Judged

5:02 PM
I am frustrated by people who feel that they have a superior position to me and can judge my actions. I fully admit that I have made mistakes, that I have fallen more than I have walked, that I flat out screw up more than I would like to admit. But I am my own worst critic. I do not need others to point out my flaws as I can promise I am fully aware of each and every single one of them, and have ached over it for longer than imaginable. I am at heart a perfectionist, and I detest the imperfections and failures in my life. I am horridly embarrassed by some of the behaviors that I engaged in during the cycles of my bipolar disorder. Could I control it? No. Could I understand the ramifications of my actions? Not really. Do I need to be reminded of these over and over? No. I am healing, I am in the process of getting my feet under me and becoming the person I want to be. I am making changes in my life based on what is best for me. I need people who believe in me, who can understand that someone so intelligent can do something so stupid because of a scrambled brain, who are willing to look past ALL of the medical issues and see me. I am not my mistakes.
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Changes

9:04 PM
It has been far too long since I took the time to write here. I would have to look back through my posts to figure out where I last left off, a task I do not wish to undertake tonight. So for now I will just make a guess as to where to begin.
In good news, I have been volunteering at one of the local elementary schools. I work with kindergarten and first grade students who are struggling with reading and writing. It is awesome to be back in a school setting and feeling productive. The kids are wonderful and so open to differences - we talked about why I use a wheelchair and the kids got to ask questions and then they were good with it. It was just a part of me, a tool I used. The bad news is that I scheduled volunteering for my worst time of day and have missed at least double the days I have gone. So now we are trying to switch to afternoons, which work better for me, and I am just waiting on the local bus company to set up transportation. Either way I am exhausted by the time I am done and I am usually down and out for the day, and the next. But it is so worth it to feel that meaning in my life again, to be in a school setting, to be working with children.
Medically I have been neglectful of my own care. I have not set up a neurology appointment in months. It is hard to coordinate with my Dad's schedule (since I can not drive) but not impossible. I have ignored Gollum, the pituitary microadenoma, for over a year and probably need to get in to see an endocrinologist about him. I think it is time to scan and check his size as he is causing more problems. The muscle weakness is continuing its progression. My arms are growing weaker and I am afraid that soon I will no longer be able to push my own wheelchair. It does not help that Gollum and some of my medications have caused me to gain weight making more to push. My name finally came up for an appointment at the Mayo Clinic after two years of waiting, but I could not accept the appointment. I just plain can not afford the expenses of the trip - the airfare, the shuttles, food, the hotel for up to 7 business days. I also can not imagine trying to wheel myself around that massive campus and to obtain meals and such. I am back on the waiting list in the hopes that when my name comes up again I will be in a better position to go.
I do have an appointment with a psychiatrist in a month. We knew from my genetic abnormalities found when testing for mitochondrial disease that I am predisposed to bipolar disorder and early onset alzheimer's. Well, my brain decided that it wasn't screwed up quite enough with all of the issues it has and it went and developed bipolar disorder. I am taking a big risk sharing that here, because people have stereotypes of what someone with a mental illness is like. There is still a huge stigma involving these disorders even though they are as real and physical as any other issue I may have. I have started medication for the bipolar disorder, and although I think we will need to adjust it I have hope that everything will be well controlled. I am still the same person that I was before someone put a name to my scrambled brain, still the same daughter and sister and aunt and friend, the same writer and wanna be artist and photographer, the same passionate idealist and child advocate and teacher. I am me.
I plan on writing more on here again, but I am very tired after going to Target today to pick up greeting cards and a pair of pajama shorts. All I had were long pants and it has been warm lately. I am so thankful that winter is finally over and spring is here!! I love sleeping with the windows open, being able to go outside without layers, and the abundance of new life. It reminds me that in spite of everything, I am still unbelievably blessed and wealthy beyond measure!

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How do you swim in a wheelchair?

3:58 AM




It has been so long since I wrote anything here, and to try and catch everything up in one post would be a daunting exercise in futility. Instead I am going to just write from where I am today and fill in missing events as needed.

So today was my first day volunteering at a local elementary school. I help in a Kindy class and a 1st grade class during a 3 hour time period 3 times per week. If today was any indication, I will then come home and sleep the rest of the day :) I loved being back around kids and being in a school setting. It seems weird to me that all of the children walk and talk and there are no diapers to change. I was amazed by what the new mandated curriculum expects kindy kids to learn when it is not developmentally appropriate.

At the end of the day I did a sudden notice presentation to the kindy class on "this is me, this is my wheelchair". I tried to explain things on their level and the teacher helped me. We talked about how I can do anything they can do,I just may do it differently. Their questions were so innocent and inquisitive and uninhibited. I got busted for not having my feet strapped in by an observant little boy who noticed the buckled on the foot rests and asked about them. :) I had to confess that I was supposed to use them to hold my feet straight and my legs positioned properly but that it is uncomfortable and so I undid them. Hands down best question goes to the boy who asked "How do you go swimming in a wheelchair because the chair won't float it will sink and you will be stuck under water?" We then discussed how I can get out of my chair and walk a little ways with help and that no one would strap me in my wheelchair and then push me over the edge of the pool. :)
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My Christmas List

11:07 PM


Dear Santa,
I am too old to believe in you, yet I believe in your spirit of giving and reaching out to others and wishes and dreams. Thus I wanted to send you my Christmas list for this year. I wish:

1. That the millions of children abused, neglected, and trafficked as merchandise would find a safe haven
2. That no one should have to go to bed hungry because there was not enough to eat
3. That we would stop fighting over religions whose foundational principle is supposed to be love
4. For peace so children may grow up without fear and in safety
5. That all people will be treated with dignity and respect regardless of disability or ability
6. That the world would take the time to remember what Christmas is supposed to be about
7. For new beginnings and the strength I need to do what I wish to do
8.  That we would learn from the senseless murder of our children that we need to radically change policies to protect our children
9. That every orphan will find a forever family and be claimed
10. To find a way to return to the one job I ever loved

Sorry I did not leave you milk and cookies. The cookies are in the container on the kitchen counter and the milk is in the fridge. This is a do it yourself household.

Love,
Bethany

P.S. I am still waiting for that hippopotamus

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Share a Little Love

11:44 PM
I have been very upset by the tragedy in Connecticut, especially as a teacher who drilled with little kids repeatedly for this situation never imagining it could be real. Had this happened when and where I was teaching, I do not know how I would have kept all of my children safe. I know there is nothing I can do to help those who are grieving, but I can do something positive to help overcome the evil.
So when I was at Target to pick up yet more medication, I purchased a package of 5 gift cards and put $5 on each one. I then instructed the pharmacist to give one to each of the next 5 customers. She kept asking me if I was sure and I tried to explain my reasons. So five people who are also in a position of needing to spend money on medication each received a little gift. I wish it could have been more, but an unexpected gift is always welcome.
I did not change the world, I did not undo what has been done, but I did look at the darkness and reclaim some of the light.
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A prayer

12:55 AM


Dear Lord,

I have so many questions for you. The problem is that I don't think I get to receive the answers while I am here on earth. Today 20 parents sent 20 children off to school with the excitement of break coming and the promise of a new day. Tonight 20 sets of parents are not tucking their children in to bed, or reading just one more story or getting a glass of water. There are 20 children missing tonight from their families, their friends, their community. I realise that they are with you now, but the hole they have left behind is huge. The grief is not contained to these families or this community but spreads across a nation. In watching the events I kept thinking that this could have just as easily happened at my school when I was a teacher, those could be my kids not going home, those could be my coworkers and friends murdered.
Lord we need to find a way to prevent and to end these horrendous acts of violence. Somehow our society has formed in such a way that violence goes unchecked. I am sure in the days to come there will be a litany of "warning signs" people see now looking back but we need to find a way to see them in the first place. This has to stop.
I pray, Lord, that you comfort the grieving tonight and wrap them in a blanket of your peace which extends beyond all understanding. Hold them close and dry their tears. You know every tear they will ever cry. Be with the little ones who were witnesses to this horror, that they will achieve peace and healing. For the first responders and the police departments I pray for comfort for the officers who have to work this crime scene and see things no one should see. I pray for our nation, as we have fallen so far.
Thank you for the fact that I know when the children were being shot I know you were there with them. Thank you for the gifts of hope and peace and healing. Thank you for every child who walked out of the school and for the lives of every child who did not. Their memory will live on.
Lord, deliver us from evil.
Amen.
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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

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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