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Showing posts from 2017

Painting the future...

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Although I am scientist and mathematician, I am also a writer (duh...you're reading my blog) and a painter. I am not trained...I have never taken a class, but I love to paint. Writing and painting are a type of therapy for me, a way to express myself differently. When I was growing up, I watched my mother draw. She used to make pictures along the wall and each December she would paint our giant picture window with a holiday theme. I remember one year she painted a giant dove with an olive branch in its mouth. She decided that year that she wouldn't remove it at the end of the month, but rather left the dove on the window and modified the branch and other parts of the scene for each holiday. That is one of my favorite memories of my mother. She was so proud of that window.

I was surrounded by art and music in a strange way. My grandmother, who had perfect pitch, used to play the piano for me so I could sing when I came to her house on Wednesdays and Sundays. I would love stand…

The Breath of Life...

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Having a medically fragile child can provide you with a variety of experiences that, as a normal parent, you don't have. Having raised an able bodied child previously, I was unprepared for all that I would learn about medicine, all I would learn about myself. Before having Javad, I had walked quite the path. I had majored in Biology in college with a passion in Genetics. I had seriously considered becoming a Genetic Engineer or Genetic Counselor. I was fascinated with the idea that I could help families who had children with a genetic disease, either helping them seek a treatment/cure or the idea that I could hep families discover their genetic history to make family choices. Eventually I decided that Education would be my path. Soon I was teaching Special Education, seemingly another path towards preparation for Javad. After almost seven years of teaching children with a variety of educational needs, I was nearing the time for Javad's impending arrival. I seriously had no ide…

When traditions change...

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I think when you growup around a lot of chaos you cling to things that are the same. I have always been a big one for traditions. The holidays are the time when I look forward to them the most. When I was young, the one tradition my mom had (which, let me assure you, was a rarity) was to watch all the holiday movies with the puppets. You know, "The Year without a Santa Claus," (one of my personal favorites), "Ruldolph the Red Nosed Reindeer," "The Island of Misfit Toys," and so on. She loved those movies. I loved them. I raised my children to love them. They were one of the good times with my mom, where there are so few. I am not sure that I am watching the movies this year. My world is upside down and I am not sure what I am doing.

I love the holidays. I love to decorate. I love to play holiday music loudly and dance and sing. None of that is happening right now. I am not even sure where the stockings are and all the decorations are in the attic where I…

Winter is Coming...

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Today as I crawled out of bed (after hitting the snooze about five time), I heard the wind blowing against the house, shaking everything. The East Winds, which are not nearly as bad at my house as they are at school, have come in with a vengeance. It is cold outside. When I arrived at school it felt like I may be blown away. An icy wind, cut through me like a cold, sharp knife as I walked into the building. Passing by a crew of construction workers layered in thick coats, and I'm sure much more, reminded how lucky I am...lucky to have a job I love, lucky to be a part of my students' journey. The construction company working on our school, LCG Pence Construction, gathered new and lightly used coats for our students, many who in poverty, who have no access to outerwear that will protect them from the impending weather. Students flocking to getting a garment that will protect them through these winter months. This is an example of community drawing together. I am lucky to be a pa…

Dear Future Self...

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Dear Future Self,

I see you. Right now I am feeling that sometimes life can be a challenge. When looking back on this time, I know that you have so many conflicting feelings. There was sadness, anger, frustration. There was sorrow, annoyance, but also the beginnings of joy. Don't beat yourself up that this happened. Don't feel guilty. We have have spent so much of our life feeling guilty. There are times in life when things don't go as planned. It's okay. We started this journey so many years ago. We were on a path that we thought was clearly planned out but it veered in a different direction. There was no fault, no blame.

Look back on these times and learn from them. We have spent a lifetime spinning, sometimes nearly out of control, grabbing the same items from the shelf of life. Although each of the items looked like they were different, we have found that they were the same. Now you know that these aren't really what you need. Beauty and glamour is not necessar…

Broken hearts and angel wings

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Today, seven years ago, my Grandfather died. R'Dean Smith, a strong man in his 90's, had, what we believe to be, a massive stroke. My Grampa was one of Javad's biggest cheerleaders. He and my Grama would sit with Javad during long hospitalizations, singing to him, reading to him, talking to him. Grampa would call and ask how his "Big Boy" was doing. He definitely had a heart for my son.

My grandparents also held our MTM Community in their hearts and prayers. Each time a child passed, I would call them, tell them about the family, about the child and they would put their prayer warriors on it.

Seven years ago, my world changed. The loss of him has forever changed my life. I believe that Javad misses him too. My one comfort is that I believe that my Grandfather watches over those that run in the Playground in Heaven. This last few weeks have been difficult for our small community. Three boys have passed away, leaving their shattered families behind. Hearts broken, …

Like a Leaf Floating in the Wind

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Walking down the trail, a sliver of light cutting through the dark trees throwing shadows onto the trail. One step in front of another, slowly gathering speed and strength, walking around the shadows, stepping into the light. Forest wildlife scampering in front of me, breathing in the fresh air, filling my lungs, stretching them fully.

I think about those who are struggling to breathe, parents who are lost in their own personal woods, trying to find their way to the light. Dragging their feet, step by step, frantically searching to find the one that they have lost. Looking behind each tree, lifting each branch, searching.  Each of these personal forests, side by side, crossing over into one anothers territory, catching a glimpse of others along the tree line.

Sometimes walking through the forest is lonely. You are alone with your feelings, ever engulfing you. Sometimes it feels as if you are losing your mind, thoughts swirling about in your head. The walk can be lonely, others reachin…

Leap of Faith

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“Just when the caterpillar thought the world was ending, she turned into a butterfly.” – Proverb Today I went on a hike. It was my first hike in quite awhile and it felt great to be outside, light breeze blowing and crisp temperatures. Pulling my boots on felt like touching an old friend. They were comfortable against my feet as I walked along the path. I spent part of my hike walking along the river, smooth and glassy. Small ripples flowing slowly, barely visible to the naked eye. It was beautiful and serene, just what was needed on a day like today.

Today was a step back towards the life I want to be living. One that involves being healthy, happy, and filled with joy. I am in a rebuilding phase, sorting out a new direction, stepping off the path that I have walked so many years. Like a caterpillar, I am breaking free from the cocoon of grief that has held me for the past few years and walking into the sunlight.

While hiking, I came across this incredible bed of lava rocks. Rememberi…

Grabbing teardrops from the sky

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Being the parent of a medically fragile child can be like riding a roller coaster with a blindfold on. As you are riding along, the breeze flowing through your hair, all of the sudden you are rocketing downward, screaming, body flying and being jostled from side to side, then a sudden stop where your stomach feels like it's coming into your throat. Then other times, the ride is going along smoothly, rolling hills, laughter and joy. It feels blissful and warm, peaceful almost.

You never know what to expect. In some ways, parenting a medically fragile child is similar to parenting any child. In some ways it is quite simple, you get accustomed to the medical part, you become a professional of sorts, while balancing the constant surprises.

In my small MTM-CNM community, there is a sense of interconnectedness. I don't want it to seem that everyone gets along swimmingly. It's a group of families brought together by children who have the same disease. There are many personalities…

An Unexpected Birthday

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My sweet giraffe boy just celebrated his 16th birthday. Although Javad shook his head "no" every time I asked if it was his birthday, I assured him that it was indeed his day since I had been present sixteen years earlier for that ever so epic day. When I think back to that day now, I realize what a fog it is...blurred images like a watercolor painting in the rain. The joy of entering the hospital, welcoming a new member of the family, to the chaos and wondering of the next steps. I remember laying in the operating room, waiting for the scheduled C-section, hearing the doctor pronounce that "It's a boy," then nothing. No sound coming from my sweet boy's lungs, silence except the doctors talking. My questions were answered in vague ways before they injected me with Morphine and I went off to slumber land for the next hours.

While I was sleeping, much discussion was happening, looking at his lungs, putting him under an oxygen tent. The hospital where he was b…

Where everyone knows your name...

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Yesterday my sweet giraffe boy was released from the hospital. He was admitted a week ago Friday with pneumonia in both lungs. It had already been a rough week. He had been wracked with fever and overwhelming amount of secretions. I won't go into the finer details, but let's just say that there was snot coming from every orifice of his cute face. This was our first hospitalization in about a year. It was both strange and comforting to be there, walking familiar halls that I have walked so many times before.

I have always said, "If you're at the hospital, you don't want them to know your name, but when you have a medically fragile child, you want to go to a hospital where they know their name." That is Randall Children's Hospital. Javad is well known here to both nurses and doctors alike. They marvel at how big he is (almost 16) and how well he is doing. Some were honest, this time, that they never thought he would make it to 16. It's both refreshing a…

Tears of ash falling from the sky...

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I have been silent this last few weeks. The last weeks have been filled with lots of feelings. In our small MTM community, we have been devastated by more loss. Another sweet boy has gained his wings, sending his sweet soul to run, play and eat ice cream on the Playground in Heaven. Another family whose heart has been broken by the loss of their beautiful boy. Their loss sends ripples through the community, each family feeling loss and sorrow of their own. Sadly, this is an experience that has happened over and over, so many children lost over the last thirteen years since Javad's diagnosis.


Two years after Javad's seizure, I struggled. I have talked about this more than once, but what I haven't talked about over and over, is the power and freedom I found in the woods. I began hiking again two years ago. After eighteen years of staying out of the woods, I strapped some boots on and was led to a beautiful trail called the Christmas Ornament Trail on Larch Mountain in the Col…

Total Eclipse...

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Today was a Solar Eclipse and, in many parts of Oregon, we experienced either totality or near totality. It was a pretty amazing experience. At 9:00am, my friend and I set up camp in my front yard and waited with our glasses on for the eclipse. As the moon went over the sun, the temperature changed and became cool. We grabbed some blankets, wrapped up, and sat through the cool breeze that formed as the moon slowly covered the sun. The sky got dusky, the air cooler, and we marveled at the beauty of the amazing dance in the sky.

Life can be similar, an expected event that is so much more powerful that you expect, changes your view. Plans made. Changes in the wind that causes a turn that you never saw coming. When this happens, you are faced with a choice...bundle up and ride things out or pack up and stay where you are.

This is the crossroads where I find myself. The breeze of change has entered my life and I am choosing to ride the wave. The pieces of my life are being rearranged to p…

I wear my sunglasses at night...

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I recently got new sunglasses. They are prescription glasses so I can wear them while driving or doing other activities and still be able to see clearly. Sometimes, when I have stopped somewhere, I find that I am still wearing my sunglasses and, because I can still see, I actually forget that I am wearing them. I apologize but realize that I need to keep wearing them or everything will be blurry.

Events in my life recently require clear vision, new glasses of a sort. Glasses to help me see into my own heart, my future. When the world is cloudy and the hope is that the fog will clear, you push through with an open hand, parting the wisps of white streaming through my mind's eye. My life is in a rapid succession of changes and, at times, I am having a hard time focusing. I need glasses that will make things clear, provide me with direction.

Sometimes I think that we believe that, as adults, we will have our lives together. I know that's what I thought. I had figured that my life…

City of Angels...

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"to touch you, and to feel you, to be able to hold your hand right now. Do you know what that means to me? Do you know how much I love you?" ~Seth (The City of Angels)

I live in a world filled with angels...beautiful children who have gained their angel wings after a lifetime of fighting a disease that often shows no mercy. Yesterday morning, our community lost another child, a sweet girl whose smile beamed light into the universe. She was smart, beautiful and kind. She was the light of the lives of so many...those who knew her and even those who didn't  know her personally saw her light.

The City of Angels is filled with so many beautiful souls. Over one hundred children have entered this city over the last thirteen years since Javad was diagnosed with Myotubular Myopathy. One hundred children...whenever I write this I am overwhelmed by the sheer number. Their bodies weak although thwir minds are strong. Beautiful children bound by bodies that don't work for them.

M…

Boots on the ground...

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Today, as I surfed Facebook, I saw family after family on their way to Nashville, TN for the 2017 MTM-CNM Family Conference, an event that occurs every other year. Each of these families has a family member that is affected by Myotubular Myopathy or Centronuclear Myopathy. Javad has x-linked Myotubular Myopathy and was diagnosed when he was nearly two. When he was first diagnosed, I felt so alone. Everything on the Internet (remember this was 13 years ago), said his likelihood of survival was slim. I cried...and cried.

This was before Facebook, before many ways that we look at as natural ways to connect and communicate with others. At that time there were Yahoo groups and messenger. Somehow I found a group on Yahoo of parents (mostly moms) that had children affected by MTM. I would spend my nights chatting with other moms, sending a message then waiting at the computer for the response. Compared to today's technology it was almost torture but it was all we had. I bonded with these…

The family you choose...

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Each of us is born with a family. We are connected by genetics, connected by blood. There is a long history between us. A family tree deep with branches reaching across generations. It doesn't matter if you grow up with your family or you are adopted, there is a deep historical background that weaves through each family.

Family we choose is different. These are people that we allow into our lives, people that we choose. These people could be actual family or possibly friends or others that we have chosen to be influential. I think that the family we choose is even more powerful than our blood family. These are the ones that we feel strong enough about to be selected to be influential in our world. These are the ones that we call on in times of need, create space for. The family we choose is ours...not ones that are given but rather ones that our heart has said, "You...are mine."

Surround yourself with family....make sure they are good ones...you need them. They are the o…

Nothing is permanent...

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Life is a series of cycles...your youth, the middle of our life, the years of power, and our older years of wisdom. We travel in these cycles throughout our lives, wondering and sometimes wandering. Each phase of our lives bringing new knowledge, new experiences. Each of these experiences bringing insight into our lives.

There are times when we take side roads, wanderings from our path. These roads may give us new knowledge, new experiences ot build on. Nothing in life is permanent. If they were, then we would get stuck, not grow as people. I think about being a teenager and am grateful that things aren't permanent. I can't imagine going through life with my sixteen year old self perspective, attitude or belief. I am grateful that we all move forward, we all grow and blossom.

We are always becoming. Becoming more aware, becoming more passionate, more understanding, more knowledgeable. We are beings that evolve, move from one level to another, growing. This is how we become mor…

Music to the heart....

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When I was in high school I joined choir. After my freshman year (and I'm sure a lovely year of all freshman girls choir), I was brave enough to try out for the swing choir, Choralaires, which was the elite group of singers in the choir program. If I was chosen into this group, I would be taking two choir classes a day as well as begin building friendships that would last a lifetime.

Imagine my surprise when I saw my name on the chosen list. I was terrified, excited and honored. This was a giant step forward for me as well as confirmation that I had a talent or skill that was worthy enough to share. Although I have an outgoing personality, I do not have the confidence to back it up. Personally, I believe that I hide behind my bigger than life self.

I grew up with a mother with a big personality...let's call it that to make it seem less obnoxious. I inherited some of those traits. I have been told I am a lot like her just not mean. I hope that I am not although I know I can be.…

Being whole...

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So many times in our lives we feel broken. Sometimes it comes as a small emptiness within, other times it manifests as a deep and encompassing sorrow. Shattered pieces of our hearts within our body, filling up the empty space. Shards of heart, throbbing pieces, leaking the life blood into the cavernous space created by waves of sorrow. So big that it feels that it will never heal. Life slowing leaching out of you, weakening your soul and your resolve.

Pulling yourself along, hoping that your grief isn't too big, overwhelming for those around you, finding the space within yourself to continue, even when it seems that you can't. The brokenness of our selves hidden behind a thin sheath of grief, visible to those around us who struggle to find a way to help.

The journey, dark and winding, is covered with a thick blanket of sorrow. Walking the path, hoping to find where the fog begins to lift. After a long walk that is mired with hills and valleys, you crest a hill that begins to s…

Eyes of the Soul...

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Deep inside of us, our soul looks out and surveys what is outside. Through our heart, there is a vision of our head and heart combined. The turmoil that may occur inside our most private selves, left hidden to others and should be sheltered, sometimes even from ourselves. The heart, the center of our being, through which our lifeblood pumps, should be treated with tenderness. Feelings shaking us to our core, laying a path toward joy, the heart and soul guide us forward.

Feelings are complicated, there is no real guidance as to which path one should take, follow the heart or the mind. Jumbled up in a ball of confusion and chaos, sometimes the path to the soul is jagged and rocky. Carefully walking the path, avoiding all the parts that may cause us pain, focusing on the light ahead that brings peace and joy.

Crawling within oneself, hoping to find love, hoping to find a peaceful path where there is comfort and love. The soul, soothing our hearts, plying it with gentle and tender love. T…

You are not alone...

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Being alone. This is something each one of us fear. Fear is a powerful emotion. Fear is a feeling that is cause by the belief that someone is in danger...it is the fight or flight.  Even the introvert, one who likes to be alone, fears actually being alone with no one to care about them, notice their presence or notice that their absence. No one wants that feeling. Many of the choices we make are based on the fear of being alone. This, my friends, is no way to live. It is not good for our mind or soul to make big decisions that may impact our futures based on one thing only...fear.

I am currently reading the book, "Year of Yes" by Shonda Rhimes, which I highly recommend although it isn't at all what I thought it would be! For those who know me, saying yes is an actual problem for me, I often say yes too often and some may think that I need to read a book called "Year of No!" LOL! Throughout her book, Shonda talks of how she is petrified to do most anything. Here…

Endings and Beginnings...

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For those who know me, you are well aware of the last few years and the personal trauma that I have experienced. This is not to make anyone feel sad or sorry for me, but rather to just open up the space that acknowledges what has happened. Javad's seizure two years ago was a monumental event, one that altered my life forever. He went from a boy who could do many things, although affected by Myotubular Myopathy, to a boy who was essentially in a coma for six months, a boy who can't move or breathe on his own anymore. It was a dramatic event that has made me look deep within myself, sometimes seeing things that I didn't like.

The first year after the seizure, I literally had a daily goal of not crying (while students were in my room). Some days I was successful, while others I was not. That year, I felt every bit of sadness that I had not let myself feel for fourteen years. I had spent all of these years handling Javad's health issues, addressing doctors, controlling the…

A bag of memories...

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I have a little purple bag that contains years of memories...small trinkets I have collected that have meaning to me, although probably not to others. Each of these items were carefuly chosen and placed lovingly in the bag, carried with me in my purse, transferred from one to bag to another. I had it with me at all times, until...

Some time in the last two years (after Javad's seizure), I put my bag of memories into a purse and then lost track of it. I mourned that it was missing, so much of the last 15 years held in it but felt that it was somewhere, in a special place that clearly I didn't know...it would turn up.

So, imagine my surprise when I was looking through an old purse and viola the purple bag was there! YAY!! Soooo, today I decided to open the bag and see what's inside. It was exciting and nervewracking. I had no idea what might be in there.

Laying things out a rush of memories flooded over me.  Pieces that have been collected over hospital stays, trips and othe…

As you wish...

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The Princess Bride is definitely on the list as one of my favorite movies. It is completely cheesy, yet one I love. Buttercup, a young woman on a farm, realizes that the farm boy, Wesley, has fallen in love with her. This through a series of a single spoken line, "As you wish."

Three simple words, "As you wish"...carry such deep power. It opens the flood gates of emotion both within oneself and towards others. How do we decide what we wish? How do we define the parameters of our "wish?" By definition to wish something means to feel or express a strong desire or hope that something, that is not easily attainable, will happen. How do we decide what we desire? How do we know what's best for us? for others?

Todetermine this, we need to examine our lives, our thoughts and our desires which will lay a foundation for joy and content. Once we have determined these, we must begin to create a plan that will lead us toward what we "wish." For some, thi…

Changes in the wind...

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Change: 
noun
1. the act or instance of making or becoming different.

Change happens. Sometimes we don't plan it. Sometimes the wind shifts and its necessary. 

Change can be both frightening and invigorating. It can be empowering as well as terrifying. 

Changing requires you to look within yourself and examine what you currently have been doing and what is required to move forward. You must examine your goals and what you want, make a plan, and enact it. Sometimes creating a life that you love means that you look at your life as it is and makes changes. You must remove the pieces of your life that aren't bringing you joy replace them with things that do. Creating joy isn't about glowing with happiness but rather finding satisfaction within the life you lead. Sometimes change is required in order to find that satisfaction, find that peace.

How does one go about making this change? This is where the hard part is...looking within to see what it is you desire, what your hopes for y…

Standing up for yourself...

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Standing up for yourself can be a fragile undertaking. The outer person and the inner person often conflicting. Confidence can be fleeting when confronted with situations that bring up feelings of rejection from the past. Personal growth can be a challenge when constantly plagued by feelings of inadequacy and doubt. These feelings often control our decisions and our ability to fully meet our own expectation or expectations of those around us.

Many of us, people that manage to function in their everyday lives, have deep feelings of inadequacy that dictates the decisions we make.  When interacting with others, they present as emotionally fully formed adults while inside there is questioning and wondering if we, indeed, are who people think or rather imposters in our own lives. Imposter syndrome, something that impacts almost 70% of the populations, is where high achieving individuals are unable to internalize their successes and often feel that they are a fraud. Every success that they …

Teamwork makes the dream work....

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Teamwork makes the dream work....I say this to my students almost every day when encouraging them to work together and find solutions. Teamwork is a skill that we all should employ. The idea of two or more people, with a common goal, focusing on its success. To experience true success, we all need to be a part of a "team." Who that team consists of can vary depending on the situation, where you are, who you are with. The team is how we find success.

Each of us needs to find our team, the people that hold us up, push us forward and keep us accountable. People on our team ask the hard questions, make us look inside ourselves, and support us. The team is there to hold us up when we can barely stand, the team guarding us when we are down.

Choosing people for your team is one of the most important tasks ahead of us. Some of these people are specific choices, bound together by common interests or occupation. Friends that have come together to support one another and help one anoth…

The Healing Power of Water...

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Water has always had a special place in my life. When I was young my step-dad, Ron, was a fisherman so we spent many of the summer months down at the coast. I grew up working as a deckhand helper next to my mother and eventually graduating to work as a deckhand on my own. Floating on the ocean, feeling the ocean breeze in my face, sprays of sea water covering my body and soaking my skin, cold hands baiting hooks, sharp knives slicing through the fish, cleaning out their innards and tossing into the ocean for the gulls to snap up.

Water has always been the place that I find my peace. I can sit on the beach for hours, stormy or sunny weather alike, the feel of the sand between my toes. Laying lakeside, hearing the surf lap against the shore, gentle sounds that repeat in rhythm.

It does not surprise me at all that this love of water was passed on to my sweetest boy. He used to take a bath in a horse trough when he was younger. It used to be an hour long affair, sometimes out on the back …

What does it mean to settle?

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Recently I was talking to a friend about the concept of settling when it comes to love, relationships, even possibly marriage. What followed was an interesting conversation about what does  settling mean in the context of life and love?

For many of us, our twenties are a time when we are wide-eyed about love and hopes for our future. We want a life filled with financial security, stability and regular passionate lovemaking. We want to have a partner who is visually pleasing, physically fit, intelligent, well-read, and pleasant to be around. We want it all.  We want the fairy tale ending, our soul mates. The one person in the world who makes us whole.

What happens if that complete package, the one we have been told to wait for, doesn't arrive? What happens if we meet someone who is not the one but meets some of the criteria, do we settle?

Settling means to accept or agree to something that is less. Settling, in the relationship sense, is to be with someone who may not have all the q…