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

Tuesday, August 9, 2011

A Year Ago and Today

I thought today would be much more emotional, much more difficult. I thought my mind would be driven back to that day, one year ago, when the perinatologist first found a heart and kidney abnormality in Julia and first uttered the words "likely chromosomal abnormality." (Of course at that point he thought it would be Down Syndrome.) The date has obviously crossed my mind, but thankfully my thoughts have been more consumed by the everyday care of three children, including one very special infant. After such a difficult year (giant understatement), I mostly feel grateful to have Julia here with me.
Today Julia and I had an appointment with an ENT doc and an audiologist. She never had a newborn hearing screen in the chaos surrounding her diagnosis, so I thought we'd better catch up. The ENT doc was great-- so kind and non judgmental, and also from Alabama. The audiologist was equally kind. Julia's ear canal is, as we would expect, tiny. (All of her is tiny!) When we went to perform the hearing screen, Julia's noisy breathing (just like big sister's) got in the way. Usually the back up plan would be a sedated hearing test but because of her cardiac status Julia is not a good candidate for anesthesia. So we will try the hearing screen again, perhaps during nap time. Then we will see how things go with the cardio docs and their plans before making more ENT plans.
I could easily reflect on all of the ways our lives have changed since August 9, 2010. The most important change, though, is still the addition of our daughter. Our miracle girl. And that, for today, is reflection enough.

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