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When Hope Starts Watching The Clock

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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...
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Between Me and God

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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...
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When Laughter Feels Rusty

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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...
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When Fear Loosened Its Grip

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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...
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When Fear Doesn't Get The Last Word

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Friday morning I caught myself heading down the "what if" road again. I was looking at our new health insurance premiums and wondering how we were going to make it work. Before long, my mind was racing ahead, trying to solve problems that hadn't even happened yet. Then, almost out of nowhere, another thought interrupted the turmoil. Jesus will take care of this. He always does. Stop worrying. Where did that thought come from?  Nothing about our situation had changed. But something inside me had. Ten years ago, I don't think that would have been my response.  Looking back, I don't think my prayers changed overnight. They began to change during COVID. COVID didn't just shut down the world. It shrank ours. Because of Lily's compromised immune system and the reports about how much higher the risk was for people with Down syndrome, we lived with a level of fear I'd never experienced before. We disinfected everything that came into our house. Groceries. Pack...
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What Time Couldn't Heal

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I've never been completely comfortable with the saying "Time heals all wounds." I understand why people say it, but the older I get, the less convinced I am. One of the things grief has taught me is that it doesn't follow a manual. It doesn't move neatly from one stage to the next. It doesn't keep a schedule or ask permission before showing up.  Maybe that's okay.  I've had enough scars—both visible and invisible—to know that healing isn't the same as erasing. Some scars fade until you barely notice them. Others remind you they're still there when you move a certain way. Grief has felt a lot like that for me.  I have had four c-sections. I've always formed keloid scars, both internally and externally, from those surgeries. Even now, I can have sharp ripping pain if I turn a certain way or get up too quickly from lying or sitting down. That's what grief has often felt like for me. Most days I don't notice it. Then something shifts—a...
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What Feeds my Soul

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Over the last few years, I've noticed something. Without really intending to, I've been feeding my soul. It has looked different than I expected. It started with walking around two lakes near my house.  At first, I was walking to get exercise or to my brother's house to be with my mom. As I walked, I started noticing all the beauty around me.  Swans, ducks and white pelicans gliding gracefully on one of the lakes. Otters, gators and spoonbills in the other.  There were bald eagles soaring overhead, ospreys circling or even hovering midair before diving into the water for their dinner and oh my, the Florida sunsets are breathtaking. I don't need a beach nearby to witness incredible sunsets. Florida seems to supply them pretty much anywhere.  On these walks, I started praying more. A rosary, a chaplet or even just a prayer that was on repeat in my mind and heart that needed to be said... again.  Around the same time, I noticed other things changing too. I found my...
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