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The Hardest Part Isn't The Caregiving

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What wears me down isn’t caring for my children. It’s everything I’m required to do around that care. The forms. The phone calls. The hours on hold. The appeals. The annual reports. The documentation. The constant need to prove that my children need the things they clearly need. It’s honestly a full-time job that I somehow fit into my other full-time career as a mom.  And none of this is happening for just one child. At different times, I’m navigating all of this for three of my children—and lately, sometimes four. Each one comes with different offices, different paperwork, different people to call or meet with and different rules I’m expected to understand. The difference is that being their mom—the caregiving, the routines, even the days that can feel a little like Groundhog Day—is familiar. There’s actually something comforting about that rhythm. I know my kids. I know what they need. And caring for them is one of the ways I know how to love them best. The hard part is everythin...
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Do You Speak Lily?

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"Halp" It’s one of Lily’s favorite words. It sounds like help, and technically it is help, but if you live in our house, you know “halp” can mean a whole lot of things. It might mean her shoe or sock needs fixing. It might mean one of her well-loved books needs to be taped back together. She might be pointing at your phone because she wants to look through your pictures.  It might just mean she wants to hear you list familiar names and places, or the titles of Barney and Bluey episodes she knows by heart. Or it might mean her iPad has reached 10% battery and therefore, in Lily’s mind, is dangerously close to death and must immediately be exchanged for the fully charged backup. Lily does not let iPads die. Ever. She’s just as particular about batteries. If one of her musical toys or sound books starts sounding even slightly off, Lily notices immediately. Most of us probably wouldn’t hear the difference. Lily does. “New batteries” is less of a request and more of an announcemen...
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Who Will Know Them?

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Yesterday, I read a story about a mother in her late sixties who was arrested after allegedly giving medication to her two adult sons, both of whom have severe autism, and taking medication herself in what authorities say was an attempted murder-suicide. All three are expected to survive. Her husband had died the year before. She was caring for their sons alone. I don't know enough about this family to know everything that led to that terrible moment, and nothing makes what happened okay. But I haven't been able to stop thinking about them. Not only about those two men, but about their mother. Because there is a question parents like me carry that doesn't get talked about nearly enough. What happens to our children when we get old? Not when  they  get old. When we do. I will turn sixty next year. My dad died at seventy-four. I don't say that because I expect to die at seventy-four. I hope and pray I have many more years than that. But fourteen years doesn't sound as...
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The Heart of Forgiveness

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Sunday morning, six of us walked into a tiny chapel in Boca Grande for Mass. I've heard Sunday's Gospel many times. Peter asks Jesus how many times he has to forgive someone who sins against him, and Jesus tells him not seven times, but seventy-seven times. But this time, it was the last few words that stayed with me. "Unless each of you forgives your brother from your heart." From your heart. The priest talked about how easy it is to say we've forgiven someone while still carrying around the hurt. We revisit it. We complain about it. We replay what happened. And I started thinking about the people I've forgiven. Or at least the people I thought I had fully forgiven. Because I think there can still be some residual pain. Most of the time, it sits quietly in the background. I can go weeks, months, even years without giving it much thought. And then something happens. A memory. A photograph. A place. A phone call. Sometimes even another hurt that looks enough li...
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God's Divine Delete Key

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I spend a lot of time asking God to delete things. Worry. Regret. Uncertainty. Fear. God, on the other hand, seems far more interested in the “restore,” “redeem,” and “repurpose” keys. If God handed me a keyboard and said I could push one key to improve my life, I’d probably choose Delete. Delete fear. Delete waiting. Delete the things I wish I could change. Delete the things I can’t control. But the older I get, the more I realize God seems to prefer a different set of keys. Restore—relationships, hope, perspective. Redeem—mistakes, detours, painful experiences. Repurpose—things we never would have chosen. And sometimes, if I’m being truthful, I’m not ready for any of those words. Sometimes I still just want Delete. There are things in my life I would erase if I could. Not the people I love or the parts of them that make them who they are.  Things I wish had never happened. Years I wish had gone differently. Losses I would undo. Chapters I would rewrite. I used to think redemption...
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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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