Our Version of Normal

I hung up the phone Thursday  and cried. Not because I had received bad news exactly, but because I was beginning to wonder whether anything I did would ever be enough. After that call, I felt defeated. The call concerned an appeal I've been working on for my son, Leo. Once again, I found myself trying to prove the extent of his disability to people who have never met him. I've submitted evaluations, professional opinions, and documentation of his needs. But apparently, it still isn't enough. What made that call so difficult wasn't simply being asked for more documentation. It was the fear that I might never figure out exactly what they're looking for. That I could spend weeks gathering records, making phone calls, and searching for answers, only to have Leo denied again. And then...

I've been thinking about a question I'm not entirely sure I want to answer. Do I like the person I become when things get hard? Sometimes I do. I can look back at some of the hardest things I've walked through and see strength I didn't know I had. I can see perseverance, faith, courage and a willingness to keep going when quitting would have been easier. But if I'm being truthful, that isn't always the person who has shown up. There have been hard things I haven't carried particularly well. Times when I've been angry, bitter, impatient or so consumed by what was happening that I became someone I didn't particularly like. That's probably why something Fr. Mike Schmitz said in a recent homily has stayed with me. “I want to be the kind of person I like when things get hard.” I have a prayer I say often. It isn't eloquent or complicated. Help me speak like Jesus. Help me see like Jesus. Help me love like Jesus. Help me forgive like Jesus. Help me...

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...

"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...

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...

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...