Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, February 8, 2012

A Wave

This week there have been several losses in the Trisomy community, and several more are fighting illnesses or undergoing major surgeries. My heart is truly broken for the families of Caitlyn, Alexandria, Jovie, Grayson, and Mohamed as they mourn. I don't know why these things seem to happen in waves. The same was true back in late August when several beloved children with t18 passed away, and then sweet Lilly went to heaven just 12 hours before Julia, and little Madeline not long after. I feel the grief of these families as if it were my own. Yesterday the feeling of helplessness that I have felt so often since losing Julia was overwhelming as I learned about three year old Caitlyn's passing. (She developed RSV that progressed rapidly over a couple of days.) I found myself unable to concentrate on anything. Even though this is not about me, I can't stop thinking about Caitlyn's mom. She fought so hard for more than three years for her girl. She was her biggest advocate. She made sure Caitlyn had heart surgery. She has been the sole caretaker while her husband has been deployed. She did everything for her daughter. As empty as my days feel without Julia after a full year, I have a small sense of what Caitlyn's mom feels after three years. It is devastating. It is crushing. It is beyond sad. It is hard. As another mom of a t18 angel said, we don't move on. Instead, we carry on, keeping our little ones very close...always.


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