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

My Messenger in Pampers

Her name meant miracle, and according to every medical statistic her very presence in my classroom was indeed a miracle. This child born with not one but two very rare genetic abnormalities, a combination that the National Institutes of Health could not find any record of happening previously, was a stunning miracle. With a single crooked smile she had melted my intimidated heart and I swept her up with love into our very special classroom. My rules for our class were that every single child, regardless of any lables that may have been placed upon them or accessories they may require to thrive, was first and foremost a child who could do all things unless proven otherwise. Miracle seemed destined to test my ability to hold to these beliefs, and my ability to patiently and lovingly meet her medical needs. Her personal accessories included a g-tube and a trach, both of which were highly offensive to Miracle. So offensive, that given about 5 seconds she would wiggle a finger under her trach and pull the tube out, and often then rip off the entire system and throw it onto the floor. Given about 15 second and she would also manage to pull our her g-tube during a feeding. Perhaps I am a bit extreme, but I prefer my children be able to breathe without fear of losing an airway, so I quickly became very familiar with the battle required to replace Miracle's trach tube. She hated the tubes and put up an incredible fight for a four year old child. Trust me, language is not necessary for communication. Miracle had some physical manifestations of her genetic disorders, and one day a first grade student stopped in the hall and pointed at her while grabbing a friend by the arm. "Look at that monster! She is a total freak!" My heart broke, broke because 6 year olds had already learned to hate, broke because my children were going to have to make their way in this cruel world, broke because they were blind to the beauty of my Miracle. Some days I questioned whether it was worth all I was doing, whether I was doing anything that was really going to make a difference in the lives of my children, whether my love was sufficient. I delighted in the successes of every single child, but was I doing enough? I began to wonder whether my professors in college had been correct about having to emotionally disconnect as a teacher in order to be successful, to detach and not teach with all of your heart because it required too much from you. We celebrated Miracle's fifth birthday in class with cupcakes and song, with party hats and laughter. I was so proud of my Miracle, of the fact that she had such a fighting spirit, of how much she had overcome and the skills she was building on. She had just begun to use switches to communicate choices, she was very close to walking with a gait trainer, she crawled like crazy and had even pulled herself into a chair. She had the best laugh, she appreciated silliness and used her vocalizations to take part in our classroom chaos, she "sang" along at circle time, and she clutched her beloved cloth diaper as she fell asleep when she was worn out. When we played ball or ran, she liked nothing better than to go fast and feel the wind in her face. One week after her fifth birthday Miracle was not in school. She had developed an infection in her trach and was sick. I called daily to check on her, and on Friday her mother was pleased to tell me that she was back to normal and would be at school on Monday once the doctors were certain that the antibiotics she was on were covering the specific infection. On Monday Miracle's little body could no longer fight and her spirit slipped free of the tubes and braces and limitations that she had battled against. I had never known that the human heart could shatter into so many jagged pieces. Tuesday I wstumbled through the motions, thankful the school had another teacher helping in my classroom, as I lovingly gathered all of Miracle's belongings and art work. I took a yearbook and had each classmate sign it with a fingerprint and every teacher and therapist who worked with her write a message inside. I gathered all of the pictures that I had taken of her and put them on CD and another teacher printed them for me to give to her family. The special education department at my school passed around an envelope for donations to assist her family, and I watched in awe as others gave to the family of my child in such abundance that I was able to provide them with $200 in American Express gift cards to use for gas and other expenses related to her funeral. Parents of her classmates sent in cards for her parents, which I gathered with all of her belongings. I ran my fingers over her cloth diaper and cried, not for her but for me. I somehow managed to keep my composure as I met with her parents and handed over the last possessions, last artifacts I had of their child's life. They in turn amazed me by donating her wheelchair to the school's program so that another child could benefit, a child who perhaps could not afford a wheelchair. Over the days that followed I grew angry with God for bringing this beautiful child into the world only to have her suffer and then die. Where was the miracle in all of that? Then with all of the wisdom of ages, one of my temporary inclusion peers looked into my eyes and asked me "why are you sad? Miracle is in heaven now. Shouldn't you be happy for her?" The wisdom of a three year old floored me. I was sad and angry not because of Miracle's experience, because I knew she was finally freed from the tubes she had tried all her life to remove, but because it hurt me to let her go. As I thought, I realized that Miracle's life truly was a miracle. She was a messenger who exuded lessons on true love, on living each day as if it might be your last, on what is beautiful and precious and of value. Just when I was considering shutting my heart out of my greatest passion because it seemed to cost too much, Miracle showed me that the price is reflective of the value. If I removed my heart from teaching then I would be denying my kids all of me, all of my love and attention and focus out of a selfish desire to not be hurt. Loving hurts, but it is worth it. Because in taking the risks you learn to live, to celebrate the tiny victories, to be in the moment, and you have the blessing to love amazing individuals like my Miracle. She reminded me what life was all about and where my priorities needed to be and continues to give me strength as I face my own medical issues. You may not like it, but you take it on with grace and dignity and style and a willingness to always live and laugh and love wherever you may be. In her honor I have the hands of a small child releasing a butterfly forever etched on my back to remind me of my own Miracle.
4 comments:

This is overwhelmingly beautiful, Bethany. Heartfelt thanks. Your words, the message you shared here I'm sure will carry many-a parent - not for the thought of Miracle - but for the knowledge of one.very.special.special.ed.teacher.

Barbara


Beautiful. I cried. I pray that you realize how amazing you are and what a gift you have for writing.


That is beautiful. Miracle is with you all the time, daintily releasing the butterfly of life on your back. You and Miracle were both lucky that your paths crossed, and you both brought incredible impact into each others lives. And don't forget - Miracle isn't far away - she's up there, watching you, laughing at your inability to do anything but engage yourself whole-heartedly into what you do with your special kids. And don't change a thing : your love nurtured Miracle and will nuture many more.

Your Miracle reminded me of my own little Abigail who, in similar and different ways, "exudes lessons on true love, on living each day as if it might be your last, on what is beautiful and precious and of value". I don't feel like I need to be reminded, but your post did remind me today of what's essential - an important reminder message in my life today. Thank you!

Alison in France
ps: I really like your style (Dr Boucher has some great blogger friends out there!) and I will be hyperlinking your blog to Abigail's so that I can continue to follow your fascinating stance in life!


perfect for the angel carnival! touching....


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

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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