Not much has changed - each day is like shampoo:lather, rinse, repeat. So there is nothing big and exciting to write about. So instead I am going to write a few little random bits and pieces that do not necessarily go together except that they all came tumbling from my mind. This could get scary. :)
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Teaching Tidbit
When a new student transferred to our school district with an IEP in place we had to accept that IEP and place the child accordingly and then we had 9 weeks to call a new IEP meeting to discuss what we felt was appropriate placement with appropriate goals. Nigel was a transfer student who had just arrived in the classroom, coming from a district where you received services even if you were just considered at risk and were not delayed. They had more money than we did. It was lunch time and we were pouring milk into cups. He looked with pure disgust at the cup placed before him and then spoke up. "Excuse me, but at home I have a nipple." (meaning that at the age of 4 1/3 he still drank from a bottle) The principal happened to be in the classroom and she immediately responded "Well at home I have a Marguerita. Life's tough kid."
Nigel also tried to do a "gangster" deal with one of our other students who was using a stander to stretch out his hamstring. He slid up next to him, eyes darting to make sure no one was watching and then whispered in a grovelly voice "Heyyy Samuel. Wanna get down??"

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Oasis in a Desert

I have mentioned before that I never get thirsty. This is a hard concept for people to understand because it is completely natural and innate for them to get thirsty. For me a sense of thirst is as foreign as a sense of sight is to an individual with blindness. I have figures out what it might be like from reading and from wanting more of a beverage that tastes good but other than that I have no idea. We have tried every low tech problem solving idea known to man and I must confess I have left a Hansel and Gretel trail of forgotten water bottles I was supposed to carry with me and drink from. We tried scheduled drinking every 3 hours, but I would be in the middle of something when the alarm went off and then never remember to drink. So finally after years we are doing a brain MRI focused on my hypothalamus to see if we can determine a cause for this lack of thirst. The dehydration is causing problems with my already damaged bladder and my already ill functioning blood pressure so we need a plan here, an oasis in the desert. Although an oasis in a dessert sounds pretty good too!

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Last weekend I decided that since it was summer it was time to paint my toe nails. This is like a circus side show act and I could easily charge admission for a crowd. I do it myself only because I can not trust anyone else not to bump my toe joints, which is a pain unlike anything other. It is like playing Twister with nailpolish and contorted feet. So I begin by propping myself on the floor with the necessary supplies. I also take extra muscle relaxing meds and pain meds. Then the contortion begins. It is like trying to paint the toe nails of a cat. My muscles do not cooperate, I end up with nailpolish in places I definitely was not aiming for, and my toes rest against each other in a very unhelpful manner. Finally about two hours later and half a bottle of nailpolish remover I am satisfactorily done and exhausted. I won't paint them again for a few months hopefully.

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Tummy Time

Next week I have an appointment with the PA at the GI office. I had requested to see the other doctor in the practice for follow up because I just could not communicate with the doctor I have been seeing - he even admitted more than once that he was not paying attention to me. The secretary - AKA gatekeeper- decided it would be too long to wait to see the other doctor so she settled on having me see the PA. I don't mind, I have seen the PA before and she actually listens to me and understands what I am saying. My problem is not swallowing right now, the problem is that my diet is limited to basic carbs otherwise I suffer severe stomach pain and nausea. Living off of breakfast cereal, tortilla bread, toast, melon, crackers, milk and occasionally cheese can't be providing me with all of the vitamins and stuff that I need. Its the unintentional vegetarian diet.

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Heat Hermit

Due to the fact that the Dysautonomia has taken a hammer to my internal thermostat, I have to be very careful with temperature regulation. In the winter I can not maintain my own body temperature and rely on heat, clothing, blankets, and hot drinks to keep warm. Winter is easier because I can always bundle up more. In summer I can only get so naked before breaking local laws. I have great trouble keeping hydrated, although I do supplement with popsicles. And I become a heat hermit. Any day that the temperature or heat index spikes around r over 90 I can not leave the house because I can not cool myself down enough and I become at risk not just of an autonomic crisis but also of heat stroke. This summer is off to a hot start and I have already been quarantined due to heat more than a few days. And right now we only have one air conditioner for the entire apartment, positoned in the living room. I can get another one added due to medical need but it is too late this year as it would not be added until September or October at this point. Next year I am starting the process in March. So we have an elaborate series of box fans conducting the cool air to the small bedroom turned computer room/tv room where on hot nights I sleep on the couch. When it is not roasting I cool my bedroom off by opening the sliding glass door until just before I go to bed. I close it, and the curtain, because the sun has an annoying habit of shining early in the morning, which wakes me and anyone who knows me knows that waking me that early in the morning is a dangerous thing to do.

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Happy 4th of July!!

I filled a small bucket with soapy water and plopped in a sponge. I then supervised as Kevin scrubbed away every mark of his graffiti. The problem was he seemed to be having fun cleaning, so I decided that we would extend our grafitti removal project. So with bucket in hand we went to the two other special education classes and did some more cleaning until it was not fun anymore. Each teacher also played along, acting horrified that Kevin would write graffiti on his classroom walls and toys and talking about what a bad choice that was. When we walked back to our classroom, Kevin barely cleared the ground with the bucket he was lugging.
"Kevin, do we do graffiti at school?"
"No ma'am!"
"What happens if you do graffiti?"
" You clean it. And clean more."
"So are you going to draw on my walls again?"
"No Ma'am!"

After that day Kevin turned into a marker monitor, making sure they all had their lids on and that none left the tables. He always reminded me to put them away in the cupboard after we used them. And he never wrote on anything other than paper and appropriate materials again. :)

Spring used to be one of my favorite times of year, but now it is bittersweet. I still love the crisp bite as fall snaps back as it recedes (eventually, someday), I love the sudden explosion of green everywhere, I love the brilliant sunshine that emerges after the rain, I love the endless variety of flowers each as if painted by hand. I love how everything is bright and new and alive again. I love to go out in a fresh spring rain and chase puddles to splash just because I can and to twirl in the raindrops falling down with my arms open wide.
The bitter part comes because this was always a particularly active time as a teacher, with IEPs to write and end of the year excitement to plan and the joy of explorations outside for hands on learning, and the delight of seeing how far my kids had come in one school year. We always went on a Bear Hunt for Easter because everything had to be secular, and the kids followed directions of prepositions like over, under, on, around, through to find stashes of small toys until at last we reached "the bear cave" where they creeped in and found a box of bears to choose a special friend from. In May we hatched our own butterflies and watched them grow from egg to caterpillar to butterflies that we eventually set free. I was always amazed that my not so "gentle hands" never killed a butterfly in their eagerness to see them and get to them. We made special mother's day gifts and cards, and father's day too because that came after school ended and I loved being creative with these. We baked cookies, cut up fruit for fruit salad, made invitations and sent them out, decorated the tables, and set them so we could enjoy a Mother's Day tea made and served by the children (with assistance as needed). We planted flowers and watched them grow, each having a day with the important chore of watering and measuring them. There was always out water day when I asked for the kids to be sent to school in swim suits with a change of clothes and we took the huge water table, buckets, a wading pool, and every water toy ever invented out into the hot sun and just splashed until everyone was content. On the last day of school I set up a carnival in our classroom with a pinata, classroom games like bowling and bouncing frogs and pin the tail on the donkey and matching ducks and face painting and lots of balloons and bubbles with prizes at each game and special snacks. Then each id received their goodbye package from me - a framed photo that I had taken of them during the year, a photo CD of all the pictures I took, a new book chosen just for them, bubbles, and a small toy or stuffed animal.
I miss all of those classroom adventures. I miss the wonder of finding a ladybug and the lessons that came naturally from it. I miss the wide eyed wonder watching a butterfly come out of its cocoon. I miss the laughter, the fun of learning, I miss getting good and messy in the name of education. I miss my kids.

For two and a half years I worked for a large public school system in Virginia as a special education teacher. Our schools were site based managed which translates to the principals having absolute power over everything that happens at the school, with little accountability. To demonstrate this effect on student learning, let me compare two different elementary schools that I taught at. School One received a high percentage of students who did not speak English upon entering the school system and who tended to be a migratory population. Over 80% of students received free or reduced priced lunches, and it was not uncommon for entire families to live in single rooms of homes shared by multiple famillies. Special education numbers were relatively high. School Two was in an upperclass neighborhood where children entered with a high percentage of students having received a private early childhood education. A vast majority of students were fluent in English as a first language, less than 20% of students received free or reduced priced lunches, and the population tended to be stable. School One consistently performed higher than expected on standardized tests, and higher than most other elementary schools in the district including School Two. School Two had just average performance on standardized tests. School one had a culture of great teachers working together for the benefit of our children. School Two had a culture of every man for himself. School one put into place the resources the children required to learn including an ESL teacher for each grade level, a Spanish speaking assistant in each class in lower elementary, a highly accessible guidance counselor, and a school social worker who helped families access resources. School Two used resources for fancy technological resources and placed the blame for test failure on the students. At the first teacher's meeting of the year pictures were shown of students who had failed and "should have passed". The principal was an ineffective leader and an entire grade level had quit the year before I taught at that school. Teacher turnover was high and teacher collaboration was low.
In terms of poorly used resources, I can attest to the resources provided to my special education classes and purchased with school finances yet obviously given no thought. As a preschool special education teacher I had no need for the stacks of lined writing paper I received, or the scissors (heaven help me if I give a three year old standard scissors!), or the folders, or the binders, or the pencils (in fact we had our pencil sharpener removed so little fingers could not explore) or poster paints. What we needed and had to beg, borrow, and steal to get were things like construction paper, finger paint, velcro, batteries, and cleansing wipes. My classroom for children with multiple and severe disabilities had more writing paper, crayons, markers, scissors, notebooks, pencils, workbooks (!), glue, and poster paint than I could have used in three general education classrooms but we had no batteries for our battery operated toys and switch devices, no cleansing wipes, no adapted writing devices, no slant boards, no devices for the visually impaired, no construction paper, only three working push button communication devices for a class of 7 nonverbal students (so 3 at a time could communicate), no adapted computer until I brought in items I had received from a grant while teaching preschool, no velcro, etc. Each year I taught I spent an average of at least $500 of my own money to supplement the resources, or lack of resources, provided to me by the school district.
These are just some examples from just two and a half years of teaching. My teaching was interrupted by becoming disabled, but had I not I was planning on quitting with the district at the end of the third year with School Two even though I would have obtained the almighty tenure because I was so disillusioned. I was looking into private schools for children with disabilities that were less constrained by the public school attitude towards special education, where children came first regardless of perceived ability.

Every year as Thanksgiving approached, I skipped over the traditional lessons on Native Americans and Pilgrims for my preschoolers. We were still working on the time concepts of today and yesterday and tomorrow, let alone something that happened hundreds of years ago. Instead I focused on the functional and meaningful skills and messages of the holiday of working together, sharing, and celebrating what we have. So every year I taught my kids how to cook soup from a stone. We used the book Stone Soup, usually a newer version as I disliked the soldiers in the original version, and engaged in a multitude of activities that required working together. The best, and favorite, was cooking our own stone soup. It began with a stone that I had boiled for atleast an hour at home the night before, and some vegetable stock. Then each child brought in an ingredient the day before our feast. The children used plastic or safe butter knives to cut up the vegetables for the soup with assistance as needed and then added them to the pot one by one. Due to cultural, diet, and other issues we stayed with a vegetable soup that could easily be pureed. I then took the soup home that night and cooked it until the vegetables were soft. The morning of our Stone Soup feast, I decorated the classroom with Christmas lights over the tables and paper lanterns, and tablecloths for the children to decorate, and special "fancy" place settings. The soup sat on the counter staying warm in a crock pot. We then made biscuits, cut up fruit, and prepared pitchers of juice to set out at our feast table. The focus was on how we could not do this alone, but when we each added something important we had the perfect soup and the perfect feast. My kids really seemed to understand this and were excited to see "my carrots" and "Lucy's potatos", and they were enchanted by how we managed to make soup from a stone. Each child got a "magic soup stone" in a decorative bag to take home at the end of the feast so they could make Stone Soup with their families.
My life is a lot like that stone soup that I made with my little ones. It started out two years ago with something ugly and jagged and seemingly worthless, a rock of illness and disability. I cleaned off the rock and did what I could with it, but it was still a rock. Then one by one incredible people: family, friends, and people who became friends came forward and offered gifts that only they could give. They gave me hope, they gave me understanding, they gave me laughter on days when I wanted to just cry, they gave me reassurance, they gave me a sense of belonging, they gave me courage, they gave me back my sense of self, they gave me love, they gave me joy. On my own I can not make it, but with all of the unique gifts that my friends and family have given to me something wonderful and unexpected has been created, something nourishing and sustaining and greater than the sum of its parts. Thank you for being part of my community, thank you for bringing what you do and adding to my stone soup. Two years later I give thanks that what was once just a ragged, jagged, ugly rock is now surrounded by blessings and lessons and hope. I give thanks for you.

As a teacher I was never beyond using any creative, unusual, unorthodox and flat out one of a kind system to help a child learn to communicate. Duke was a just turned four year old in my preschool class who had a generally cheerful disposition, a brilliant smile, an absolute love for music and anything with wheels, and significant delays due to autism. He did not imitate, he did not vocalize speech sounds, he did not use signs or picture symbols and he did not take kindly to anyone who tried to place these demands upon him. And when I say he did not take kindly to it, I mean that this four and a half foot tall four year old who was built like a line backer went into full combat meltdown. He once attempted to break my classroom window, and I was astonished by the durability of window panes from the 1960s.
I noticed that Duke would sit transfixed during music activities, especially activities that involved instruments. So I began a "make it up as you go along, but take data to save your arse" language program. During direct instruction sessions, I would have him sit with me, and between us would be a drum. I would say a word that I wanted him to imitate, and then tap the rhythm of the word out on the drum. Then I would say the word again and guide him through tapping out the rhythm. If the word was a feasibly small object I then went through tapping the real object on the drum to the rhythm of the word and having him do the same. This worked best with highly preferred objects like toy cars and trucks, a spoon (to get a bite of pudding), a cup (for a drink of chocolate milk), and for fun sing song turn taking activities ("Hello Duke" "Hello Teacher"). I honestly had no idea if this would work or if I would have a proven failure of a communication education system. For Duke, it clicked. He heard the rhythm and music of the words and associated them with the objects.
After about a month I could hold Duke's most favorite item, a toy car, out of his reach and wait for a vocalization without the drum (we had practiced and learned it there). He would try every behavior pattern possible to wear me down and convince me to just surrender and give him the car. At first it took an average of 10 minutes of a tantrum before he would make eye contact and in what I can only imagine was pure disgust say "car". This soon spread to bubbles, light (for a light up toy), cookie, and so many more words. His vocabulary grew steadily, and the average time of negative behaviors before he would vocalize a word got down to as low as an average of 15 seconds with many spoken words without any negative behaviors.
The drum then became a way of introducing language in a social turn taking situation. I speak/drum first and then you answer/drum back. The rhythm of speaking to another person. I had never appreciated the music in a conversation before, but as we tapped out the beat I heard it in all my conversations and in the rhythm of my every day language. I could give him all the words in the world, but it was not until I found the beat that he was able to utilize them and discover language. Now even when I listen to classical music, or jazz, or any music without vocal accompaniments I still hear a language and speech in the talking drums.

* Photo courtesy of istockphoto

I find myself remembering a specific little girl that I had the honor of teaching as a practicum student in college, a little girl who at the age of three taught me lessons that I am still learning in my own life at the age of twenty eight. Josie was one of a kind, a brilliant just turned three year old with a twin brother who had significant disabilities. Josie was paralyzed from the mid chest down due to a spinal cord stroke as a premature infant, which impacted her diaphragm and thus her ability to speak loudly and clearly, but in all other ways of development she was above and beyond expectations. She was so patient with her brother, and she was his protector making sure that he was never overlooked at circle time or during activities in the classroom.
One day during free play in the classroom, otherwise known as barely controlled chaos, I observed that Josie was over at the fine motor/art center and she was methodically wheeling herself back and forth from the shelf to the table. What I saw amazed me. She had apparently been unable to obtain anyone's attention over the din of her peers shouts and laughter and yelling, so she decided to get the materials she needed by herself to draw. The paper had posed no difficulty, but the basket of crayons was too large and awkward for her to place on her lap and wheel over to the table. So instead she was putting one single crayon on her lap, wheeling over to the table, placing it beside her stack of paper, and then wheeling back for another color. I watched in amazement at her determination. She was not frustrated, she was not angry that it was taking her so long to do what another child could have done in a single grasp, she was not bitter. She was focused and proud of her ability to achieve her goal even if it took her more than a dozen trips to retrieve all of the colors she wanted. I had to sit on my hands to prevent myself from jumping in to "rescue" her. When she finally had every color she wanted and had secured herself before the table to begin coloring a smile brighter than any I had ever seen lit up her face as she surveyed what she had accomplished. She had done it - it may have taken a little longer, it may have been done a little differently, but she had done it! As she started to color, I slid into a chair next to her and we had the cutest little conversation.
Me: Josie, that is a beautiful picture! Can I color with you?
Josie: Sure! But you have to get your own crayons!!
Josie, thank you for teaching me how to get my own crayons, and how to be so proud of every success, and how to never give up when it seems like you can never move the mountain (or crayon basket). I was your student far more than you were mine!!

Katerina was about 25 pounds of pure stubborn will. She had never been away from her parents for any period of time prior to entering my preschool class, and she was definitely less than enthusiastic about finding herself in the midst of controlled chaos for 3 hours each day. Once it became evident that this school thing was not going to end in the near future, Katerina decided to communicate her discontent loudly and clearly. Or should I say silently and clearly. Katerina spoke both Polish and English, and had a solid 50+ word vocabulary in each language. On my home visits she chattered like a song bird, switching between languages and putting on a show of singing and dancing. At school she became silent, refusing to make a single sound. She also knew basic sign language, and thus began our stalemate. I would request that she use her voice to make a request or communicate, and she would easily communicate her desires or preferences in sign language. When she thought no adults were listening, she would chat happily with her peers or even read from memory the Brown Bear, Brown Bear book to an audience of dolls. Yet the minute an adult approached she reverted to the silent treatment.  Finally one day about three months into this stalemate I decided to up the ante to get her to talk, a skill I knew very well she possessed. I made the ultimate treat in our preschool classroom - popcorn. Then I offered it to the children, and the following exchange occurred with Katerina. All text in Red is Sign Language.

Me: Katerina, do you want some popcorn?
Me: Katerina, that was good signing but I need you to use your voice and tell me if you want popcorn.
Katerina: No voice. Want Popcorn.
Me: No voice, no popcorn Katerina. You can use your voice.
Me: No voice, no popcorn. Look at all your friends eating popcorn!
Me: You know that you need to use your voice to get popcorn.

*Image from ASL University

Barbara at TherExtras is having a Halloween Contest, and so while I have a tendency to lose contests I decided it would be fun just to enter. The contest involves writing about the benefits of dressing up for Halloween. I decided to keep it simple and not go into all of my textbooks from Child Development, but I could not resist my stockpile of photos to illustrate my points. :)

As a preschool special education teacher, one of the most beloved centers in my classroom was the "dramatic play" center. It was here with the pretend kitchen, ever rotating stock of supplies for theme play (a farmers market stand in November, a post office in February, a flower shop in May, etc.), and magical mystical dress up trunk that my little ones would be magnetically drawn.



We enjoyed the benefits of explorative dramatic play on a regular basis, in which children are allowed to make choices and explore different aspects of the world around them by taking on roles. They can take on the role of a superhero and conquor their fears, or that of the monster to make it less scary.


During imaginative play all things are possible, and there are no directions or instructions. The toys, the costumes, the props do not limit the range of the child's thinking but rather encourage thinking beyond the literal and into the world of the abstract and symbolic. Children have the opportunity to enter into play where they are in control, where they can take on the roles of the adults around them and "try them on".

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.