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Showing posts from September, 2013

A thousand angel wings...

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Have you ever seen a thousand paper cranes? Imagine what a thousand angel wings would look like, fluttering through the breeze, glittering in the sun. I am not a religious person and I'm not entirely sure what I feel about God, but I am confident that there is a higher power and I believe there is a heaven. My heaven may not be the one filled with  golden streets, but rather a playground filled with the over one hundred children and young people that have passed away in the last ten years since my cutest boy was diagnosed with Myotubular Myopathy.

I think having my littlest have this disease is actually what made me question...trying to align the ultimate love and a higher power into my place of being. I have faith, I believe, I just don't name it. Thinking of all the children and families that are affected by MTM, I like to think of a beautiful park where they are all reunited, each child welcomed by others, taught how to use their new and freely moving bodies. Their strong l…

You see the seeds...

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My life is made up of two main parts...being a mother and being a teacher. To each of these I bring a different set of skills, but the one thing that I do have is the ability to see. I teach in an area that is predominantly low income...students whose families struggle to make ends meet. Most of them don't come from backgrounds that expect a college education, many come from a place where completing high school is considered a victory. These students, and families, only see the seeds...I want to teach them to see the trees.

As a mother, I have raised three children, all in their own struggles, before being given the cutest boy with all of his. Each child had to be mothered differently, each helped to find their own path, using their strengths which are so different from the others. The cutest boy brought so many new experiences, both positive and negative, struggles where we weren't sure he would survive. Doctors that only saw the seeds, and me, who always saw the trees.

I'…

Fight for a life...

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Tonight my heart is heavy...so many are sick, fighting. Having a child with a life threatening disease and being in contact with others often puts one in emotional peril. My heart is connected with other mothers, fathers, children, who are fighting for survival.

Sometimes the burden is so heavy, my heart feels as if it will be crushed. Sometimes when you hear of things from a distance, you are able to keep a perspective, but these children and their families are burrowed into my heart...I have held their sweet hands, kissed their sweet faces, and professed my love for them.

Each of these children, sweet, special boys, smiles and laughs and warms my heart with every move. Their parents are my family, ones who know the journey that we all walk, sometimes together, sometimes apart. 

Tonight my heart is heavy...cold and flu season has yet to begin...there are no words to describe the worry that it is in my heart...

Tonight I am wishing for the ocean of healing to lap over the fighting bo…

Dearest Daughter...

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Dearest
Daughter...

It is at times like this that I think of you, when it is dark and I know that you are far away. If you should ever doubt that you are in my heart, don't. In so many ways, I look at you and marvel about the woman that you have become. I marvel that I was able to be a part of your journey. I know that I have not been a perfect mother, there are many things that I look back on and would readily change, but I have done my best and you are so much more amazing that I could have ever dreamed.

I remember when you were born with a shock of black hair. I was dumbfounded that I had created such a beautiful being. You laughter brought me so much joy. Watching you grow, run, play continued to be incredible.

Even during those hard years, I knew that you would come out better on the other side (okay, to be honest, I hoped that you would come out better on the other side) and watching you struggle to find your identity was painful and hurt my heart. I wanted to be able to swee…

(Don't) Stay Calm and Carry On...

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"Stay Calm and Carry On" has become a famous British saying most heard (and seen) during the London Summer Olympics. In light of recent news from The "Happiest Place on Earth," I think it's time to neither Stay Calm or Carry On...rather it is time Raise Hell and Change the World!

Raising a child with any kind of disability is a challenge only known by those who experience it. You child is a joy, but no one would choose this life. Watching your child lose out on experiences that other children take for granted is painful. As parents, we want our children to live their life to the fullest. As a parent of a special needs child, what this full life looks like may be different from child to child.

Recently, the "Happiest Place on Earth," Disney has released that they will no longer be having their Guest Assistance Program, which allowed us to being our cutest boy to the exit so he can ride the few rides that are totally available to him. Since his stamina …

Surviving the storm...

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Sometimes a storm comes in many different forms...sometimes it's an actual, literal storm or, in my case, it is a storm of negative events that have come through my world in the last week.

It seemed that things started out so smoothly, as a matter of fact it started out great. New people in my world, ones that brought stability, peace, and a future. There are also those who have held my hand throughout the last year, hugged and held me, braved the rocky shores and rode the waves with me...these people are my foundation, my rock. Then came the storm in two gigantic waves. The first blew me over, sweeping my feet from underneath, sucking the air from my lungs, making it hard to breathe. Everywhere around seemed gloomy and fractured, confusing and unsteady. Grasping for those around me, grappling with information that makes no sense, has no rhyme or reason. After sleepless nights and a sense of helplessness fading, the second storm hits, this one coming from the side, totally unexpe…

Already there...

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When traveling through life, we often wonder (and agonize) as to when we will get "there." Many times throughout my own life, I have wondered this very thing and, yet, now I am wondering where "there" is? I mean...really if we think about it, there is no "there" just as there is no "here" There is no real today, tomorrow, or yesterday. When tomorrow arrives, it will be today and then today will be yesterday. Truly it is the desire for things to be named that runs our reality and "there" is just one more name.

We are "there" just as we are "here." There is not a linear path that gets us from one to the other but rather the experiences that we are experiencing. We, ourselves, are not moving. Here is there and vice versa. Some may say that this kind of circular conversation is what is most confusing, when in actuality, it is the most clear.

We are...we are here, we are there. Our being takes up space in this place and …

What you allow...

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This has been quite the week...although school with the kids has been good, there has been some other drama that has been a bit rough to absorb. It is interesting when you have to do self-reflection about how you see the world. It is a difficult time for one when your world is shaken to its core, when what you thought, isn't.

So, that brings us to a new space. What now? What will be the new sense of grounding?

Building a foundation in one's life can be long and laborious...a journey of many years, but when one's belief about the way one's world is skewed, it shakes the foundation that has been built over the course of the years.

So, here we go...it is time to examine what the foundation should be. Building a life that has peace, being in control of what you want to be, not letting the unexpected things throw you for a loop.

It's time to decide what you will allow...because that's it...what you will allow, will continue. And that's a pretty great place to st…

Who you travel with...

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Yesterday was one of those kinds of days and by one of those days, I mean a weird one. Don't get me wrong...I love my classes, I love my students, I love my schedule...what I don't love is that I don't get to really spend time with my peeps. I didn't realize until the other afternoon how important these people are here...

I am now creating my schedule to spend time with those I really care about...It's for my own sanity...sometimes it's the small things! It's about being with those who lift your spirits, who let you blabber on about something exciting or hug you because you are sad. It is about finding those who walk a similar path and joining onto a path together. It's about those you travel with.

This week has been one of lessons, one of side swipes, profound relief and happiness, and profound sadness as well. It has been one where watching another's loss is almost unbearable and looking at others with new eyes breaks your heart. Students that are…

Letting your light shine...

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Now that we are in the second week of school, I continue to think about the environment and culture  that I want to create in my room. One of the most important that I want to focus on is respect and persistence. I want students to have respect for themselves and for others...I want them to feel that I have respect for them and their ideas. This is about letting my light shine. A small crack in the exterior can release something so beautiful that it can create a path shining before them. Letting my light shine can create a safe place for them to let theirs shine as well.

This is about growth. It's about moving forward in a new and exciting direction, creating a space where beauty can become apparent. Creating a place where all voices are heard and respected. Each of these voices a light that offers something to the picture. I want the smallest voices, then students unheard to feel that they have a place to open their mouths and let their beautiful song be shared into the world. A…

Today I want to...

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Almost every night, I write. I write for myself...I write for others. I write to still my mind, calm my heart. I write to remind myself that I have words worth speaking, hearing, reading.

As a teacher, I want my students to recognize that they have much to offer. Their words matter, their actions speak volumes, they are significant.

Life can, at times, seem tedious, like a vacuum where we don't make an impact, but that is where we are wrong. Each of our movements change the breeze, which impacts others.

We are but one ripple in the pool of the world. These ripples can join together forming a wave, which can alter paths.

We have value. We make impacts. With every breath, movement, sigh, tear. With each action we take, no matter how big or small, can change the world. We must embrace our own power, be someone worth knowing.

Memories...

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Today was one of those days when I had a flashback to the cutest boy's early life. My husband brought him up to lay next to me on the bed. We snuggled, kissed, snuggled more, kissed more. Then, the sweetest thing happened...he fell asleep. Having him next to me felt so right and brought up so many memories of when he was younger.

Sometimes there are reminders that our cutest boy is not like other boys. I mean, I know he is not the same...he is on a vent, has a feeding tube, but it is the little things that are reminders...things like snuggling together on a cool Saturday...

I got a message from a woman that we had met in the NICU...they have moved forward from that scary time. Sometimes, I feel like we have stopped...or at least slowed down!

Memories are a funny thing...long compressed and hidden, surprised when they appear. A glimmer of our pat yet an exciting hint into your future.


Fight in the dog...

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Tonight I am fighting again. Fighting for my son's rights and our rights to have him cared for at home. This feels like it has been a twelve year fight and it never seems to get old. Our current insurance, Moda, has recently paid $40 million to have our local basketball stadium after them. Ugh.

They want to increase their brand name, improve PR, and this is the method that they have used, renaming a stadium. Really??? What about funding healthcare for those who cannot afford it, funding health clinics, remodeling Boy's and Girl's Clubs to make them not only a place to exercise, but a place where kids can learn about health and wellness..

So much could be done for our community, for my students, for their families...medical care, youth "care through clubs, food baskets"...it never ends.


Having one big team versus the other is helpful!! Here's to continuing to fight the good fight and being grateful for all we have!

Making changes...

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I can already tell I'm going to like this group of kids. I love that I can tell them stories (and they laugh) and that they are interested in what comes next. Today was one of those times when kids really make your heart sing...At the end of the class period (well, three minutes were left), I told the students that they could talk with their neighbor. Immediately one of them said, "No" and then someone else said, "Please tell us a story about Javad." My heart melted and I decided right then that my heart was theirs! Nice feeling...

Making Progress...

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So the year has officially started. This means that although things are good, I am totally and completely exhausted...Each day I have come home, after a wonderful day, and fallen asleep while doing work...Hmmmm...it's the beginning of the year.

I look at my students and recognize that for some, this is a year in the balance...which direction will they go. We are starting the year different...building community, building a place that it is safe for students to listen, learn, make mistakes. It is an interesting way to begin, consciously constructing a place where they can be amazing.

It could be a process that is slow, but I will be working with them constantly that giving up is not an option...Everyone does everything...there is No Opting Out of class and the activities involved. This is a full participation classroom. It's about making progress even if it is slow and steady. One step at a time, one question at a time, one answer at a time.

This is a year of hard work, a year…

The Phoenix...

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The story of the Phoenix is one that has been around for thousands of years. As the end of a thousand years, the Phoenix builds a funeral spire, throws itself on the fire and throws itself on the fire, only to be reborn. The Phoenix is the story of rebirth, changing the way that you might respond to another.

Tomorrow is the first "real" day of school. The rebirth will begin. As I walk into the ashes, knowing that there was a fire that was ravenous...destroying all in its way...I will see the Phoenix rising.   slowly making its way into the sky. Reborn whole and new. A new beginning, a new story to be written.

Blog-nation...

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This is my 237th night blogging. I started January 8, 2013 as a way to find my center, still my mind, communicate my thoughts for both myself and others. My type of blogging is a bit of an ironic thing...you are speaking from the heart, writing for yourself and yet love the fact that others are reading and commenting. It is a strange twist...checking the number of hits on the site and wondering if another topic would have sparked an increase in readership.

Frankly, I have written about everything...life, experiences with having a son with a disability, experiences with a daughter moving away, travels, love, and occasionally math. A variety of topics to cover a variety of readers.

Ultimately, I know that I am not writing for others, but knowing that I am reaching others make me feel good. I have spilled my heart, fears, concern, and joy...it is indeed the therapy that is good for me. I love to write...to form my thoughts and put them down in a place that I can re-read again and again i…

Champions...

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Tomorrow is the beginning of my twenty-first year of teaching. It is strange because I remember the first day of teaching like it was yesterday and yet, it was a lifetime ago. My daughter was eighteen months old and I was fresh from college, ready to take on the world. I was naive, wide eyed and idealistic. In many ways, nothing has changed. I am still wide-eyed and idealistic, strongly holding the belief that we can make a strong impact on students' lives...that we have the ability to support and encourage their dreams, help them to make those dreams come true...fly them into their universe giving them wings.

Each of these students are champions in my heart. They work hard, crafting their vision. Their will to succeed may reach beyond what anyone they know has previously completed, their desires pushing them to greater heights. All that's required is an avenue, someone to lead them along the way, someone to open the doors and show the light that is ready to flow in.

Their wil…

A Creative Life...

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Fear is an amazing feeling and by amazing, I don't mean a great feeling, I just mean that it has amazing power. Fear can be both constructive and destructive. Fear can be a driving force in decision making and how one lives their life. Fear can also be a roadblock to the creative process or drive one into a frenzy, spinning towards nowhere.

Each of us, as humans, often stand in places where we don't want to admit that we have fear. So many view it as a weakness, somehow lessening us. In many ways, admitting that we have fear actually strengthens us, shows our deep and true character. Having (and admitting) to being afraid shows that we are willing to take risks and be open.

One of our greatest fears is the fear of being wrong. We think that somehow being "wrong" means that we have lessened our status...when in actuality, the concept of wrong versus right is another discussion to be agreed upon. Having this type of courageous ad deep discussion does not lessen our st…

Where Hope Lives...

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Students arrive Thursday...this is the time of year when teachers begin to really feel panicky and wonder if they will be finished before that first foot steps over the thresh hold. Meetings and more meetings fill our days while we worry about whether or not we have an adequate beginning to this new and shiny year.

Being a teacher is a unique career...your prime directive is to fill empty students with rich knowledge that not only makes them better students, but better people. It is a job that weighs heavy on most...the enormity of it all. One day they walk into your classroom and when they leave they should be full of information, but lower on attitude.

The student transformation is one that takes place over time. When students enter school, they are wide eyed with wonder. School has no negative connotations, just joy and excitement. Every day is filled with the new and exciting. Learning to read is mind blowing and finding out that 11 isn't two as one would think, but rather on…

FInding one's center...

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One of the most important things that I have learned, and most likely need to continue to learn, is the importance of finding one's center. When this blog began, I was hoping that it would give me a stillness of mind. Giving me a place to spill out my thoughts that make my mind race well into the night is something that is beyond needed. You never want to admit that you are some kind of crazy, but I am pretty sure that I am some kind of crazy. Sometimes my world seems to just be on the edge of spinning out of control, which can be pretty unnerving for someone who has a deep desire to be in control.

I am trying to re-find my center...it was inextricably lost over the last year. A year that crept up in the dark of the winter and led to crushing personal results. Although healing has begun, getting so far from the center threatened my ability to see when things are off kilter.

How does one re-find their center once it has been clouded and difficult to see? This is the path that I am …

A slice of life...

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Tonight I cut my thumb...it's pretty deep and I think that it's wide. I held it tight to stop the bleeding and got help to bandage it. You might wonder what I was doing...well, I have to admit, I was trying to get some ice cream. There is a delicious Persian Ice that was so hard I used a knife (duh!) and it slipped and cut my thumb. Sometimes common sense does not take over!

It makes me think of other times when we take (potentially dangerous) risks to have an outcome that we hope for. As a teacher, I feel like my career is filled with these risks. Now, I am not naive, there are no knives involved, but since I am invested my students' success, when it is not, it can cut like a knife. The risks in education are high...so much that students' futures are just one element. With the onset of an increase of high stakes testing, each teacher is now potentially at risk due to their students' test scores. Imagine what this might mean, teachers who might be interested in low …