Whatever may come

I sat in her darkened nursery this afternoon, rocking my sleeping baby, awash in a love so deep it hurt.

I prayed a new prayer. I told God that I was opening myself up to whatever her future holds.

I have always chosen optimism, but today, maybe for the first time, I could throw my arms wide to the unknown. I realized, in the rhythm of the rocking chair and her steady breathing, that being this child’s mother is worth it. Whatever it is, whatever may come, it is worth it. I am hers and she is mine, and that joy is bigger than any fear for the future. I suppose I’ve known that for a long time, but I felt it in a new way today.

In this season of gratitude, I know for certain that I am incredibly blessed.

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Gratitude

Jon and I were asked to share a bit of our story as part of a gratitude-focused church service in celebration of this Thanksgiving holiday. Neither of us has much public speaking experience, but we prayed hard and gave it our best shot. It was a beautiful service, but if you’d like to skip to our portion, it begins at 1:17:17 and lasts about five minutes.

http://new.livestream.com/accounts/58396/events/2567642/videos/35545542

I am so very grateful for the two precious lives God has entrusted to us. Jon and I are honored to be Corin and Lina’s parents. Through an often-difficult journey, and through all the chaos and exhaustion of raising young children, we are thankful.

Happy Thanksgiving, friends. May your homes and hearts be full this holiday.

Meet the newest members of our family

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That’s Esther hiding on the left and Xerxes on the right. The tank decorations were Corin’s choice. He is thrilled with our new pets. Yesterday morning, he came out to discover that daddy had brought home the centerpiece from a Chamber of Commerce awards dinner: a vase containing two frightened-looking goldfish. His ecstatic response was, “This is a real surprise. I never expected to have fish as pets.” A trip to PetSmart and $100 later, we were equipped for the newest lives depending on us for survival. We’ll see how we do. Goldfish are not exactly known for their hardiness.

Monica and David – and Lina

Last night, Jon and I watched Monica and David.

Jon bought it for me last Christmas, and it has taken us this long to watch it. We both wanted to see it, but we also feared it more than a little.

It’s a 2010 documentary film directed by Monica’s cousin, and it is the love story of two adults with Down syndrome. It follows Monica and David from their wedding through their first year of marriage, filling in back story and sharing an intimate view of the families who support Monica and David in their efforts to live as independently as possible.

The movie does not gloss over the complexity of the situation, and it was that that kept us from watching it sooner. What if it brought too much to mind our greatest fears, rather than demonstrating our highest hopes? This worry has become very much a part of our lives in the last 14 months. We often feel that tension between wanting to see and be encouraged by adults with Down syndrome, but also fearing too much exposure to the challenges that lie ahead. We know challenges will come, and we certainly talk about them as we discuss the future, but we have chosen not to focus on them. Instead, we focus on how much is possible for Lina; we dream very, very big. We instinctively shy away from anything that might cause us to impose limits on her or what is possible for her future.

The movie was beautiful and ultimately more encouraging than discouraging. I have been thinking about it a lot, and about what it says to me about Lina. There were parts that were painful in their reminder of the realities of intellectual disability. But Jon and I both found plenty of hope in what these two people have found in each other and the life they are forging with a lot of support from people who love them. We could identify with and understand so much about their parents, and we also saw mistakes we hope to avoid.

We were reminded how fortunate we are to be raising Lina now, in a time of great progress in medical care, research and attitudes. In 1983, the life expectancy of a person with Down syndrome was 25. Twenty-five! That life expectancy has since nearly tripled, to 60. Tremendous strides in research are being made, including the recent announcement that scientists were able to turn off Down syndrome genes. (That admittedly brings up another very complicated discussion, which I may tackle here one of these days.) Thanks to the tireless efforts of so many in the Down syndrome community, societal attitudes are changing and people with intellectual disabilities have more opportunities than ever before.

The movie also reminded us of things that still need to change. Monica and David both had a strong desire to work, but it was a significant challenge for a number of reasons. One of the special features on the DVD delved a little more into the issue of employment for people with disabilities, and I did some of my own digging. The U.S. Department of Labor Office of Disability Employment Policy reports that in October 2013, the workforce participation for people with disabilities was 20%, compared to 68.5% for the general population. That’s pretty dismal, and I know the number is much lower for people with intellectual disabilities.

We don’t get discouraged by those kinds of numbers, though, because Jon and I operate from a very firm conviction that Lina is exceptional. Maybe we’re being naive. I suppose some will think so. But we continue to believe that by holding firm to that conviction and providing all the resources we can find, we will infuse Lina with the courage and give her the tools to do amazing things.

Perhaps more than any other takeaway, David and Monica was one more demonstration of a lesson I am still learning in a whole new way: people with Down syndrome are, always and above all, people. There is so much more that makes my child like any other than makes her different. I used to think I knew this, but I didn’t, really. Now I am living it. I know that my child, like any other, is going to forge her own path in life. I will do all I can to guide and equip her, but ultimately, Lina’s future is her own. I firmly believe that, through the grace of God, it’s going to be a beautiful one.

Pizza with style and other matters

We ordered Pizza Hut this week, something we do more often than we should but not nearly as often as I’m tempted. Credit where credit’s due, folks.

When the delivery guy arrived, Corin answered the door and promptly started a one-sided conversation about who-knows-what. I came behind with a hungry Lina on my hip, blocking Tennyson from running out the door with well-practiced footwork while signing credit card receipts one-handed over Corin’s head. It must have looked like something, because the friendly delivery guy seemed awestruck. If he only knew the orchestrations required for using a public restroom…

I’m spoiled by having Jon work from home. Yes, he works crazy-long hours, and there’s definitely less separation between work and home life. But most Thursdays, I can put Lina down for a nap, drive alone to pick Corin up from Mother’s Day Out, and then the two of us take a pretty relaxed trip to the grocery store. The kid LOVES grocery shopping. He rides in the car cart or pushes his own mini cart when we can find one, and it’s usually a surprisingly smooth experience. The only hiccup this week was the holiday Matchbox cars display right down the aisle from the greeting cards I needed to peruse. ‘Tis the season for the “Christmas is coming” solution for every impending toy tantrum.

We were loading groceries in the parking lot when a woman I recognized approached me and asked for a ride to the Mapco up the road. I realized I had given her that same ride some time ago. She had four heavy bags of groceries, so I helped her put them in the back seat and asked if I could take her all the way home. She mentioned that she’d been waiting on her Food Stamps check, which comes a week later now than it used to, and had been without food for a couple days. She said it would be steak and potatoes that night for dinner.

Corin thought it was all very interesting. He kept commenting on the traffic. “See all those cars backed up? See them? No, mommy, I’m talking to the other girl.” The “other girl” was at least in her late 60s and had what appeared to be an older model hearing aid that whistled and whined in familiar fashion. So then the backseat commentary switched to the subject of hearing aids. “Your hearing aid is squealing at you. Lina has a hearing aid. Her hearing aid squeals sometimes. I don’t have a hearing aid. Mommy doesn’t have a hearing aid. Daddy doesn’t have a hearing aid. Tennyson doesn’t have a hearing aid. Lina has a hearing aid.”

Our passenger mentioned that her mother had passed away a year ago, and I said we had lost my husband’s grandma recently and missed her badly. Again, the backseat commentary: “Mommy, what are you talking about? Oh, Grandma Ginnie? Grandma Ginnie died. I hope we don’t die.” I suddenly felt grateful our passenger’s hearing aid was malfunctioning.

We dropped her off at a pull-in behind a lovely old home she said belonged to her brother. I offered to help her carry the groceries into the trailer she lived in on the property, but I got the impression she didn’t want me to come any farther. I said good-bye and drove home in relative quiet, wondering if there was something more I should have done for someone who was clearly struggling.

And to end on a very serious note: I’d like to share a link to the adoption blog of friends who have been on a difficult journey in their quest to adopt from the Democratic Republic of the Congo. Please take a moment to read the latest update. It has weighed heavy on me since it was posted. Both the families in this story need your prayers, and I believe this issue needs greater exposure. So many well-intentioned families here in the U.S. feel called to provide for orphans who long for a family, and it breaks my heart that this desire is being used by the lowest of the low to profit by removing children from their own loving homes. Again, please pray for these two families and the precious kids who need to go home to their parents and siblings. 

October in the Smokies

Of the things I inherited when I married into Jon’s family, one of my favorites is the tradition of regular trips to Gatlinburg and the Smoky Mountains. The Geary/Sharp clan has the outing to a science, finely-honed over more than 30 years. Truthfully, Gatlinburg falls into the… quirky category of vacation spots. Much of what you find there would kindly be labeled kitsch. But there’s no doubt it has character, and this family has found the gems. These mountain vacations have come to mean as much to me as they always have to Jon. So much of what we love about the area is wrapped up in years of family tradition and memory. Now we find great satisfaction in passing all of that along to our own kids.

This year’s trip found Corin enthralled with every aspect of the vacation, from the cabin to the mountain trail to the always-bustling streets of Gatlinburg. Lina also seemed to enjoy all the people watching and outdoor air, and she made it a true vacation by sleeping in until after 8 a.m. every morning. We ate ourselves silly, turned pruny in the hot tub and relaxed in ways that just don’t happen at home. This year, we also keenly felt Grandma Geary’s absence, which made us all the more thankful for the addition of family we see far too seldom: Aunt Nelda, Cousin Veronica and her son Colin.

It was back to reality with a vengeance this week, but we have our memories of this October in the Smokies carefully tucked away, the newest entry in a priceless compendium.

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