Having a Child With Down Syndrome: It’s a Wonderful Life


I watch the movie, “It’s a Wonderful Life,” every Christmas Eve with my husband. For the last six years, it’s been on in the background while we put together toys and get ready to play Santa for our daughter, Lila, and son, Lawson.

When I was young, I hated that movie. A black and white favorite of my dad’s I never took the time to really understand. But now, in my 30’s and getting ready to welcome my third child in a few short months — our second with Down syndrome — I think I know a little bit about George Bailey.

He was a man with a pure heart and work ethic that wouldn’t let him leave the hometown where he thought he didn’t belong. It always depressed me as a child. I thought my dad, who would readily admit his tendency to pout much more than a grown man should, was seeing himself in the frustrated, overworked father who could never seem to come out ahead.

And then I became a parent and I lost my father to a years-long battle with cancer. And I started watching that movie a little more closely.

George Bailey comes to the end of his rope because of circumstances he can do nothing to control. He’s worked so hard, been kind to others, loved his family, and a fluke sends him into a world he doesn’t recognize.

I felt like that a lot when we found out our Lila had Down syndrome. In a place I didn’t think I belonged. A world that felt unfamiliar and so far away from what I had planned. I started writing about our journey, my feelings as we navigated through this new world, sometimes sharing things I knew might upset the ones closest to us. And then one morning, after posting a late-night blog, I woke up to an email from my father:

My dearest daughter,

Every time I read your blog a few tears run down my cheeks. Tears of happiness! Yes, life isn’t fair. But the day our Ms. Lila was born I didn’t even think about that. As I told you and Charlie that day, “God doesn’t make mistakes.”

As I watch sweet pea grow into a beautiful young lady, I am so proud of her and you and Charlie for the wonderful parents you are. You have grown with our precious Lila and are doing a tremendous job of being a mom and dad…

Ms Lila is my George Capra. She and her parents have reminded me that “It’s a Wonderful Life” for me too!

All my love,
Paw

Now I know, the point of that movie is not that everything works out perfectly. George Bailey’s $8,000 is still missing when he realizes he wants to live. His loved ones just fill in the gaps. The path doesn’t have to be perfect to be well-worth the trip. In fact, sometimes you realize life is more wonderful when you’ve been down the roads that seemed scary and foreign, and have discovered their hidden beauty. It is a wonderful life. Not because it’s easy, but because you see it from a place you didn’t choose, but you are so glad you ended up.

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And I will welcome this new little boy with the extra chromosome into this wonderful life. Just like my daddy would have. And we will all sit back and watch him make it an even better place to live.

Follow this journey at Letters to Lila.

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