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

Thursday, September 8, 2011


I have always been part of a community. Growing up, my community was my church. My family was very active in our church, and it was a constant in my life until I left home for college. Even now, through our journey with Julia, my home church in Alabama has journeyed with us. They have offered prayers, sent cards and emails and flowers, and overwhelmed us with love and support when I brought Julia to meet them.

College provided its own sort of community, especially at a small Christian university. We have friends all over the world that we met during those four years and some of them have walked this journey closely with us. Through this community churches in many states and countries know of Julia and pray for her.

Marc and I were newlyweds when we started graduate school in a new state. Our schools were in different cities, so our one shared community was our church. That church in Maryland adopted us and provided us with a real family. We found ourselves with friends from age 2 to age 92. What a blessing that group was to us during such an exciting yet stressful time in our lives. We still share beautiful relationships with friends we first met during that time.

Our second time living in Maryland (we are a military family and move every three-four years) we again found a church that gave us a family. Our small group in particular became extensions of our family as we shared weekly meals and discussions, spent holidays and birthdays together, celebrated births and accomplishments, and shared losses. We felt so blessed to be a part of such a church that we could not leave it even after we moved an hour south to Virginia. We just felt our time there was not finished and so we continued to be a part of it. When I ended up on bedrest with Julia and then when Julia was born with so many challenges, we found ourselves unable to make the drive very often. Our friends there continue to provide vital support to us through visits, phone calls, emails, shared meals, and prayers. We still share life together, even though now it is from across 4 states! They remain the first friends we long to share any news with -- both good and bad.

Finding a new church in Virginia has been challenging, in part because we have remained so attached to our last church. We have, though, found an amazing community in our neighborhood in Virginia. From the day we moved in over two years ago we were immediately welcomed by so many. Our kids have friends and playmates all around, and Marc and I have found wonderful friends as well. As soon as I was put on bedrest with Julia, our neighborhood friends organized two months worth of food. My immediate neighbors insisted on a baby shower brunch to encourage me while I was pregnant. Since then we have had more people than we could count -- all who lived within 3 minutes -- doing anything and everything they could to help out. We have a seemingly endless supply of babysitters and friends who want to be involved. One dear family has teenage sons who love to watch our kids and who have been praying for Julia and us since before she was born. (Love!) Our frequently visiting family members can attest to the truly unique neighborhood we find ourselves in. They know we are well cared for even though we live far from family.

Recently I found a new community of trisomy families online. Before that I knew of a few blogs written by trisomy families which were and are so helpful. The interactive groups on Facebook provide quick feedback, helpful advice, and an instant prayer chain when needed. They celebrate the little things and big things our amazing kids can do. They mourn together when there is a loss. I wish I had known about these support groups when Julia was born. I would have felt much less isolated. A fellow trisomy mom compiled a list of wonderful resources for trisomy families on her blog which can be found here. I hope I can help more trisomy families find and connect with these resources. We are not alone.

We are finally back to finding a church closer to home, but I know that we have been provided for more than we could imagine. The words to this song, written by the former pastor in our Maryland church, have proven so true for us.

"Christ has no body here but ours. No hands or feet here on earth but ours. Ours are the hands through which he works, in this world with kindness.

Ours are the eyes through which he looks. Ours are the feet on which he moves. Ours are the voices through which he speaks to this world with kindness.

Through our touch, our smile, our listening ear; embodied in us, Jesus is living here. Let us go now filled with his spirit into this world with kindness."


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