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

Saturday, October 5, 2013

Day 4: Legacy



One of Julia's legacies to me is knowing that every day is a gift. Because I knew I would have limited time with Julia, every day had to count. When she was diagnosed with trisomy 18 in addition to a hypoplastic left heart, we were told she would probably only live a couple of days. Those first 2-3 days we tried to stay awake all the time to be with her every moment possible. She certainly outlived that prediction but we never knew when her little heart would just wear out and quit. It happened 382 days after she was born, which is infinitely better than the 2-3 we were told to expect.
I attended church camp most summers until I finished high school and was a camp counselor even into my college years. One particular camp counselor during my high school years would tell us that every day we were given 24 pieces of treasure. He said we should think about how we wanted to spend that treasure and how to use it wisely. With Julia, I knew that those 24 pieces of treasure given to me everyday for 382 days were priceless. Our family worked hard to make each of those days count -- not just for Julia but for all of us together. 
Although I no longer feel the same sense of urgency in each day, I am aware that being with my family every day is a gift. 

This post is part of Carly Marie's Capture Your Grief Photography Challenge in honor of Pregnancy and Infant Loss Awareness Month. To learn more please visit http://carlymarieprojectheal.com

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