Our Version of Normal

Lately, when I think about Leo, I picture an hourglass. For years, it felt like there was plenty of sand left. Plenty of time for communication to improve. Plenty of time for academics to click. Plenty of time for independence to grow. When Leo was little, one of my favorite books to read to him was  Leo the Late Bloomer . I loved that book. Maybe partly because his name was Leo, but mostly because I loved what it represented. Leo didn't do things when all the other little animals did. His parents worried. They waited. And eventually, Leo bloomed. I think a part of me believed that would be our Leo's story too. I had already watched his older brothers, both autistic, develop strong communication and academic skills. They got there much younger than Leo, but I knew firsthand that development didn't always happen on anyone else's timetable. So I waited. I hoped. I prayed. And for a while, it really did seem like Leo was blooming. Old Facebook memories bring back videos fr...

A few weeks ago, I was at a retreat. At some point, the group began talking about disability and the words we use to describe it. We talked about how language has changed over the years and how the way we speak about disability matters.  Somewhere in the conversation, I brought up something I'd believed for years and often told people. I always believed God gave me Lily's soul, but couldn't believe He gave her Down syndrome, autism, the heart defect and everything that has caused her suffering.  One of the ladies gently came back with "That's between you and God." Those five words stayed with me.  That same retreat, we reflected on Jeremiah 1:5: "Before I formed you in the womb I knew you." I immediately thought of Lily. For years, I'd believed I had an answer. Now, I wasn't so sure anymore.  As I kept praying through it, another Scripture came to mind. John 9:1-3 tells of a man born blind, and the disciples want an explanation for why he was...

I laughed this weekend. That doesn't sound particularly noteworthy. I laugh all the time. I have friends I laugh with often. But this was different.  Once I got home, it hit me. I don't remember the last time I laughed that much.  I was asked to join my Catholic Emmaus womens group's advisory board earlier this spring. The annual planning retreat for the advisory board was this past weekend. We planned a lot, prayed often, read Scripture, enjoyed meals and snacks together, listened to beautiful spiritual music, deepened friendships and even had Mass Saturday afternoon with one of our parish priests. Laughter was woven through all of it. The last several years have held a lot of heavy things. Some I've written about. Some I haven't. And maybe somewhere along the way, without even realizing it, a little of the lightness in me got buried underneath it all.  The first few times I really laughed—not just a chortle, but the kind of big laugh that takes over your whole bod...

There are places so beautiful they almost don't seem real. Costa Rica is one such place. One afternoon on our vacation, I found myself staring across a bay that looked more like a painting than a real place. I kept looking because my brain couldn't quite convince itself it wasn't looking at a canvas. The day before, I found myself standing on the upper deck of a boat in one of the most beautiful places I'd ever seen. I stood next to the captain with the breeze whipping around me, simply taking it all in.  Not long into our forty-five minute journey to Tortuga Island, a pod of dolphins joined us, darting playfully all around the catamaran. As we sliced through the beautiful blue-green water, several raced just ahead of the two hulls, weaving in and out as if they were playing a game. Others leaped through the wake behind us. It was one of those moments I knew I'd never forget. For a little while, I wasn't thinking about what might happen. I was simply taking in w...