Along the Trace

The kids were off school for Veterans’ Day last week, so we took a rare opportunity for a mid-week camping trip. We picked a humble little campground an hour-and-a-half drive down the Natchez Trace, a beautiful historic parkway that ends just a few miles from our home. We arrived in camp around bedtime and were snuggled into our sleeping bags in short order. Lina was awake some in the night, listening to dogs barking and marveling at the novelty of nestling between her sleepy parents, but overall, the night went pretty smoothly.

We woke to a crisp, brilliantly sunny morning. There are few things as perfect as a whole day with no schedule, no responsibilities and an open road to explore. We ate our pancakes, visited with the horses who shared our campground and loaded the car and began our leisurely meandering back up the Natchez Trace. Corin loved the opportunity to help choose our stops. We visited Laurel Hill Lake, traveled short portions of the original Trail of Tears, hunted for slag at the site of a historic steel furnace and visited the site where Meriwether Lewis is buried. We explored a waterfall and hiked part of a trail imaginatively named Devil’s Backbone (a key factor in its selection for Corin’s agenda). Corin soaked up the stories from history that inevitably arose from our explorations.

I will remember for a long time the feeling of that cool, bright, free day on the Natchez Trace.

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Good morning, sunshine.

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Digging through a historic slag pile

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Well, that’s one way to take a nap.

For the shared love of a girl

Back when I first started talking about the Buddy Walk, Laurie – you may remember being introduced to her family last August – contacted me to say they were thinking about making the trip to Tennessee to join us for the event this year. I was thrilled, and the planning commenced.

Unfortunately, their family has terrible luck with air travel. They got stranded in the airport for hours last year trying to get home, and this year, storms and horrible flooding swept through their area just as they prepared to leave and threw flight schedules into chaos. They finally arrived in Nashville 16 hours later than planned, meaning they were able to catch only the tail end of the Buddy Walk. The delay was very disappointing, but we honored their determination to get here by soaking everything we could from the too-short visit. That meant a couple fun outings, but mostly a lot of hanging out together.

This visit felt different than last time. We were more immediately comfortable with each other, and the kids are a year older and able to really play together. Watching them interact was the highlight for all of us, I think. I have wondered how they will relate to each other as they grow older. Andrew and Corin hit it off fantastically, and Claire and Lina adored each other.

There is no definition for the relationship our families have. This is the uncharted water we entered when we chose embryo donation as the path to our second child. In a sea of the unexpected, this relationship with Lina’s biological family is a gift. It probably sounds crazy to a lot of you, and it probably would have to an earlier version of myself. But now, Dan and Laurie and the kids are family, and we are so grateful to have them in our lives.

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Best we could do for a costume photo

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Bowling!

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Corin directing the ball after his roll

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Playing in the matching jammies requested and chosen ahead of time by Claire

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“Ring around the rosie…”

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“We all fall down!”

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And time for a break, with the requisite hair rubbing and finger sucking

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In closing, I’d like to share what Laurie posted last night about our weekend together. Some of you have seen it already, but it seems important to have the other side of this experience represented here, as part of this family story.

Every time I tell this story of how Dan and I donated a frozen embryo to a couple in Tennessee, I hear “oh what a gift! That was so generous of you!” And I never understand why people would say that. It never felt like giving a gift. It felt like a terribly painful decision to do the responsible and ethical thing while pulling all my heartstrings out of my body across three states. It felt like tons of tears and therapy. It was sleepwalking for months, looking for a baby in my sleep that I was afraid I had forgotten to take care of. My proudest accomplishment is being a mommy and it went against everything inside me to think of a blonde munchkin being raised in another family. Jon and Jolene are the ones who gave us a gift. Peace of mind that we did the right thing. Their willingness to share their lives with us has made this a million times easier. And they gave Claire and Andrew a sister. Even if she’s a sister that lives with her own family, they still get it. Andrew has a new friend in Lina’s big brother. He was too busy playing with Corin to let me take many photos of him, so this weekend felt like a bonding of the sisters. When the girls were playing ring-around-the-rosies and Claire told Lina “you’re my baby sister,” it’s when I knew this was also a gift that would keep on giving. Forever.

Why the Buddy Walk?

I have a lot on my mind, so bear with me over these next couple posts as I try to bring some order to my thoughts.

First, I want to talk more about the Buddy Walk. We had 33 people walk with Team Lina. I don’t have the words to express how much every one of you means to us. The support is incredible, not just for this moment, but because of what it means for the future, for Lina, for our family, for the thousands of other people in our community who have Down syndrome or love someone who does and for many more who will come after us.

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I’ve thought quite a bit the last few days about the question, “Why do we have the Buddy Walk?” The first and most obvious answer is that it serves as a rallying event for fundraising. This one event is the primary fundraiser for an entire year of programs and services. Trust me when I say, those services are really important.

From the moment parents receive a Down syndrome diagnosis for an unborn or newborn baby, they have access to balanced, accurate information and first-hand experiences, delivered by a loving community of people eager to embrace them and their new child. That child and his or her family then continue to have access to seminars, social activities, educational and advocacy resources, concrete help like hot meals delivered to hospital rooms during illness or surgery…  Our local organization is also often asked to provide a speaker and educational materials to school groups, community organizations, classes of special education teachers in training, medical professionals… This is the voice of real experience for those who teach, interact with and treat people with Down syndrome. Our organization joins others to advocate at the local, state and national level for public policies important to people with Down syndrome.

All of this requires organization, planning and funds. This year, the Down Syndrome Association of Middle Tennessee raised just over $200,000 in Buddy Walk fundraising. Those funds make a concrete difference in our family’s experience now and in how Lina will be viewed and the opportunities available to her in the future.

But there is more to the Buddy Walk. The family and friends who joined us this year will tell you it’s a huge celebration, so full of joy and camaraderie. This is an open event where we take time every year to shout to our community and the world, “Down syndrome is not sad. It is not something to be apologized for or hidden away. We celebrate loved ones with Down syndrome because of what they bring to our lives and to this community.” It is an opportunity to counter stereotypes, to model open-armed love and acceptance, to mark progress, to share in a powerful community of people who know what this love feels like. It’s joyful, because loving a person with Down syndrome is joyful. Yes, it can be hard. Love is always hard, because it leaves us vulnerable and requires tremendous sacrifice. But every person in that crowd of thousands knows it’s worth it, because real, bone-deep, unselfish love always is.

I dissolved into tears just once during the Buddy Walk. It was at the end of the walk, as Lina stopped to give high fives and hugs to a troupe of cheerleaders with special needs. They adored her, and she gave unquestioning affection in return.

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My tears could have been mistaken for ones of fear and pain, and if I’m honest, perhaps there was some of that in there somewhere; but mostly, I cried then and still cry when I remember it because of how perfectly beautiful it was. I know the world can be a very cruel place, but here, there is simple joy in a hug. I thank God for these moments, because my soul will never be the same.