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Showing posts from July, 2017

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 …