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

Friday, July 6, 2012

Outer Banks Revisited

Two years ago we took our first vacation to the beaches of the Outer Banks in North Carolina. I was pregnant with Julia, and we had just that day learned of Julia's heart defect and suspected chromosomal disorder. We had to decide quickly about the amniocentesis as I was nearly 24 weeks along. At that time the docs strongly suspected Trisomy 21, or Down Syndrome. Oh, how I wish they had been right about that! We were back and forth about the amnio decision-- not because we would have chosen to terminate but because of the risk. I ultimately decided against the amnio and decided to prepare for a baby with DS and heart problems. Of course the subsequent appointments with the perinatologists showed more and more problems that would be more consistent with trisomy 18. Sometimes I wish I would have had the amnio and would have been able to prepare for Julia's diagnosis. Ultimately it did not make a big difference. We were devastated to learn of her diagnosis after birth, but either way we could not have had any idea that she would live with us for a year. Especially with her specific set of heart defects. But she did.
Last summer we visited the beach with Julia, but this time it was in Florida. It was so special to be with her at the beach and know that she experienced such a beautiful place.
This summer we are again vacationing at the Outer Banks. This time our little rainbow baby, Cohen, is with us. And so are our memories of sweet Julia.

1 comments:

Anonymous said...

Beautiful pictures (as usual!). I hope your week has been restful and full of good moments.

Maureen

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