Posts

Like a Leaf Floating in the Wind

Image
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

Image
“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

Image
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

Image
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...

Image
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...

Image
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...

Image
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…