Kayla. I don't know how old she was. I wish I knew more about her. She seemed really spunky in photos.
Amber. She passed today. I'm dying inside. I learned about life with an I-Cell baby by reading her blog. Hers was the first face I connected to I-Cell. She softened the blow for me by living with curiosity and grace. Amber's health had been deteriorating for some time, but I was not prepared for this news. She was 3 1/2 years old. She leaves behind a younger brother, Charlie who also has I-Cell, and two super young but wise parents.
Amber's passing made things so much more real to me. I know that their time here is brief but that reality didn't really hit me until now.
I have an urgent need to spend every minute of my waking hours with Niko. The desire is so strong that I have a metallic taste in my mouth. I even treasure listening to Niko's raspy breathing while she sleeps. The sound of her breathing flows and fills my lungs with tangible fulfillment, similar to the satisfaction of inhaling from a cigarette (I used to smoke 14 years ago).
Oh Niko, I wish I had the ability to stretch time.
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| Amber's doll with matching cannula and G-tube |
Rest in peace sweet angels. My heart breaks but I know you are not in pain anymore.
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