Looking inside...starting anew...

Once you have opened up and let people into the rabbit hole, it is hard to know what to say. I am here...I am moving forward, I am building something new and fresh...

I am ready to begin this new stage in my life...

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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…
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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…
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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…
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