Showing posts from November, 2017

Dear Future Self...

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 neces

Broken hearts and angel wings

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 broke

Like a Leaf Floating in the Wind

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 reac

Leap of Faith

“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. Reme

Grabbing teardrops from the sky

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 personalit

An Unexpected Birthday

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