Posts

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 homw 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.

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…