I wrote my fifty-second post last week. One post for every week over the past year. More than once I woke up on Wednesday morning with very little sleep and no clue what to write about. Maybe it shows. But, I never skipped a week. I went through the chore, some days joy, of sitting at my desk and downloading my thoughts. And I did it for me.
About six years ago I wanted to start a blog. The problem was that I just didn’t think that I had anything to say. I’m almost certain that I didn’t. I kicked around several ideas before I realized that other people were already saying what I thought that I wanted to say much better. Then Tiffanni was diagnosed with Huntington’s. And I didn’t want to write anymore.
I really didn’t want to do anything anymore. I didn’t want to serve in ministry. I didn’t want to talk to people about how I felt. I didn’t want to sing, or preach, or write music, or exercise, or go to church, or eat, or laugh, or get out of the bed. I did a lot of stuff, but I didn’t want to do any of it. And I definitely didn’t want to write.
And then just a little over a year ago, through some encouragement from my friends, I began to think that maybe I had something to say. And it was okay if I just needed to say it, no one had to read it, but I needed to go through the discipline of processing my thoughts. I needed to re-member- to take the fragments of scattered moments and connect them to some semblance of purpose, or hope, or sanity. Sometimes I needed to connect them to chaos, loneliness, and despair. But they had to be connected. I couldn’t just let thoughts come and go without thinking about them.
I never told you about the Catholic monk from the 16th century that led me on my journey over the last year. Ignatius of Loyola. I discovered him back in 2008 and he and I have explored my inner life off and on for almost 10 years. He had this brilliant thought that God could be seen inside of our greatest moments and our darkest moments. Inside of the times that I felt far away from grace and the moments that I naturally danced to its rhythms. Through the Ignatian Examen, every week I worked through these basic thoughts: “Where do I see God?” “Where do I feel God is absent?” Every week, I’ve written from every angle that I can think of about our journey of life and death.
Today, I’d like to think through those questions over the course of a year. In fifty-two weeks, three hundred sixty-five days, twelve months- where is God, where is he not? Where does he feel close, where does he feel a million miles away?
A few nights ago, I sat at a long 9-year old boys’ baseball game. For some illogical reason, this league has decided that it’s time for kids at 9 to learn how to pitch. So, we watch 2 and 3 inning games, while kids learn how to take a walk. Over and over and over. During the Novocaine-less teeth pulling, I found myself sitting next to a black lady who teaches in one of the worst school systems in central Alabama. Testing is low, scores are low, parental involvement low, funding low, resources low, hope low. We began to talk about her job. Discouraged, she told me of her frustrations- a system that doesn’t, hasn’t worked for her kids. Her babies. I asked her leading questions. I wanted to hear her share her heart. Finally I asked her, “Do you ever feel guilty?” Tears welled up in her eyes as she uncorked her feelings. With a stranger. Anger, exasperation, hopelessness, failure. Unfortunately, I am going to make this story about me, but I don’t naturally bring out depth and honesty, introspection and sincerity. I don’t naturally exude empathy. It’s not part of my personality, it’s not my default setting. At least it wasn’t. But over the last year, I’ve had dozens of these conversations. Dozens. She doesn’t know my story. But she felt a kindred pain, someone who would be sad with her. I think. I’ve had so many people be sad with me this year, I think they rubbed off on me. Some days, people just need to be sad. Without sadness, no one receives a calling. No one fosters a child. No one marches for something important. No one feeds the hungry. No one visits the prison. No one gives to a single mom. No one changes. Sadness is good. Huntington’s is sad. And maybe I could have learned that another way, but I’ve learned it now.
Yesterday, I took Tiffanni to her doctor’s appointment. Back in January, we were asked if she would like to participate in a global study. She would be entered into a database that would be available to doctors and researchers all over the world. Assigned an anonymous number, doctors would track her progression in order to formulate hypotheses and then test those hypotheses against all of the people in the database. “Of course,” I said. Anything to kill this disease. The problem was the evaluation. Each question made me more discouraged. I sat in the room, fighting tears at times, as Tiffanni tried her best to answer questions, mimic movements, and perform for the evaluation. It was miserable. It’s easy to pretend like nothing is different, nothing has changed. In fact, my subconscious aids in that agenda. It has a strong aversion to pain and will lie to avoid it. But the evaluation was undeniable. She is worse. I should have been able to notice it on my own. I mean, I pushed her into the office in a wheelchair. That’s the problem with reflection, you actually see what’s in the mirror. A year went by while I was writing this blog, words on a page, comments and views and likes and shares and friend requests and private messages and little emoticons, and while all that was going on, she got worse. A year further from what we had and another year with what we have.
I laid in the bed with each of my kids tonight. Brayden read to me. He and I sounded out new words (recapitulation-really? I’m supposed to explain that at bedtime? Thanks Geronimo Stilton you pretentious jerk.) We giggled and I snuck in a few tickles between pages. He’s a touchy, affectionate kid and kept throwing his leg over mine. Digging his head into my arm socket. I wish that I never made him stop. The girls tried to bribe me for more time by rubbing my feet and playing with my hair. I’m on to them. It worked anyway- I needed some pampering. Each one told me about her day- the good and the bad. I’m getting better at listening, at being fully present. And trust me, that’s hard because they have never-ending stories, infinite drama. But we laugh and gasp, and I repeat back punchlines and consternations. “She said what?!” “No, he didn’t.” I’ve had to discover a balance between escaping and parenting. They are my sanity, and yet still need me as dad. In some ways this disease is forcing them into what should only be adult emotions, so I compensate by fighting hard to keep them young. They don’t do cell phones (apparently every middle schooler in the world has one and “it’s not fair”), social media, or boyfriends. Huntington’s has stolen enough, it’s not taking their entire childhood. So, we laid there and talked. I didn’t have anywhere to be. I didn’t have anything DVR’d to watch. No video game or Netflix binge to get to. I forgot that I had Facebook and Instagram. Besides, my friends only posts pictures of babies and food. Meh. I was enthralled by the allure of the most beautiful girls in the world. And I just don’t know if I would have those moments in my other life- my ideal life. they might have evaded me for stuff. Less important stuff. But now they seem like serendipitous lottery tickets. The moments that might have gotten away, but now scream to be lived. To be experienced. So I do.
God has been close this year.
One of my favorite books of all time is The Lion, The Witch, And The Wardrobe. It’s one of the most compelling, exciting stories that I have ever read. It has intrigue and adventure, good and evil, deception and humanity, magic and mystery- and animals that talk! A journey through excitement, and pain and loss, and excitement again. When the Pevensie kids arrive in Narnia, it’s “always winter, but never Christmas.” But Aslan is on the move. He is anticipated in that winter through every page, every conversation. The story doesn’t go as expected, but ends with brilliance and hope. A year ago, I began to dream about writing a book. And for some reason I looked up the word count of The Lion, The Witch, And The Wardrobe. Over Thirty-six thousand words. It might as well have said a million. I laughed. And yet somehow, every week I came here and wrote. I wrote about excitement, pain and loss, and excitement again. And you journeyed through this adventure with me. You commented and shared and loved me with your own words. You encouraged me to keep writing, that it mattered, that you cared. And I believed you. Last week I finished my fifty-second post- a one-year journey shared with people I know and others that I don’t. And I honestly think that I loved it. Thank you for reading my words and loving me with your time- Last year, in those fifty-two posts, I wrote 43,815 words for me- to reflect and remember, but I’ve loved sharing every single one of them with you.