43,815

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.

 

52 Comments for “43,815”

Graham Brown

says:

Hey! I do not post pics of my kids….. My wife does and tags me in them. That is not my fault! =P This has been one of your longer posts. Every post, and I mean EVERY post, that I have read of yours I have been sad to see it end. I enjoy fantasy when it comes to reading. Charity on the other hand loves non fiction biography type books.
I know I have talked with you about what type of book you will write. I can honestly say it does not matter I would read it. I enjoy your writing. My dad told me a very long time ago that a good song can be determined if it incites some kind of emotion in the listener. I believe that is true with writing as well. You have a gift my friend.

Leslie Bowen

says:

Jeremy,
Thank you for being so open and honest with your life and what it looks like to live and care for a wife with Huntington’s. I enjoy reading about your adventures being a Dad to your three wonderful children! They are blessed to have you as their Father! I love your writing! You are very talented. I would hope you would write a book one day, I surely would read it!

says:

Please do not stop writing. You are gifted, and we all live that you share your heart and a part of your life with us. Writing helps relieve pressure. When we read back what we write it puts things in a different perspective.
I am so sorry that Tiffani is worse, but please do not feel guilty, about the testing, the endless questions. She would agree heartily to do this. Thank you for trying to keep your kids childhood as normal as possible,
As always my prayers are with you, Tiffani and the children.
May God bless Tiffani with a miracle healing

Susan Kennedy

says:

Jeremy, week after week, you have poured your heart out. And we have felt your sorrow, your hope, your faith, your frustration, your devotion, and your love. It is a journey I wish you didn’t have to take, as I wish Pastor Cox had not had to travel it years ago. But here you are, and we are here with you, in our hearts and prayers. Thank you for sharing your journey. You have no idea how you have lifted us up through your story. God bless you, Tiffani, and your precious kids. We love you more than you’ll ever know.

Reggie Hatcher

says:

Keep writing….it does things you may never fully know the extent of for your readers. In the meantime, I gotta check this Ignatius guy out. Love and appreciate you always.

Rachel Duong

says:

Over the year I have laughed and cried. My mom occasionally asks me how you are doing and I have read her a few of your post. Thank you for allowing us into your life and letting us follow this journey with your family. Give Tiff a hug for us!

Morgan Holcombe

says:

Write 43,815 more and I’ll read every single one of those too. You are an A+ human being Jeremy Sims. Thank you for being you and thank you for pushing forward. God in you, through your words, your actions, and your personality has gotten me through more days and years than you’ll ever know. I love you P-Jerm!

Sallie Conover

says:

I have read every word every week. Not one has failed to move me closer to being the woman I want to be. Simple words, usually read on my phone…..yet the power the words have had astonishes! Thank you, Jeremy. Please don’t stop. (These posts also serve as a reminder to pray for your family. I wish I could say I pray for you daily, but I always do on Wed or Thurs)

Denise

says:

I am a friend of Crystal’s from your church – but I am up here in Chicago. I started reading you because of her. You have a wonderful gift of expression. No matter how sad or angry or disappointed you may be feeling, you have a magical way with words to express what is going on in your family’s life. I can only imagine any type of book you would choose to write would be thought-provoking, inspiring, absorbing, and most likely – awesome. Thank you for sharing not only your gift, but your family and your life’s journey. Prayers to you and yours.

Stacy Cole

says:

I think we have met, not sure. But I grew up in Kingwood. Tiffanni was a year or two younger than me but my sister, Alicia Stewart was Stacey’s age. I grew up playing around the church with Tiffanni and watching Glenda play with her high heels on the organ or piano. I watched as things changed for the Cox family. I remember when Glenda had to stop driving and visiting her in the nursing home. I grieved when I heard about Tiffanni. We have prayed and will continue to pray for all of you! I have not commented before but I haven’t missed a week. I have read all 42,815 words. I look forward to your posts each week. You make us all think of things a different way or maybe just examine them a little closer for a moment so thank you!

Patricia Sprinkle

says:

Such precious moments with your children.. Cherish every bit …Someday you will awake to the sounds of silence.. They will have their own lives.. Natural attrition yes.. It is suppose to happen.. Nonetheless, life will change.. You are a God, Grace given inspiration to so many.. Pray our Heavenly Father keeps you all covered in a warm blanket of Joy and Peace.. The kind only He can provide.. Blessings to you and your family as we celebrate this week and always ..” We Serve a Risen Savior” and Don’t let the thorns of life keep you from experiencing the roses.

Susie James

says:

I hope this isn’t goodbye! I read your post every Wednesday night as I give our baby a bottle and rock him to sleep. Reading your blog as I do that helps me to stop and not take those moments for granted. John and I always thought so highly of you and Tiff during our years at Southeastern. I still remember how special you made me feel when I was on one of the Ritalin shows. O man, those were something. Thanks for sharing your many words with us. Our thoughts and prayers are with you guys.

Jeremy Sims

says:

Thanks Susie! By the way, Kevin gave me a copy of the show that you were on the other day. We look so young!

Karen McMillan

says:

Oh Jerm! I’m thankful you have given us all a platform to feel connected to you and Tiff and this journey. I’m glad the writing is meditative and healing for you. It certainly is for me! Thank you for sharing your heart and your inner thoughts. I do not have words adequate to express how deeply I love your family.

Beth Sims

says:

Jeremy, you have a gift for writing, and I have gotten to enjoy a bit of each of your children’s writing, as well. You are setting a good example for them-in writing and in life. Prayers always for you & your family. ❤️

Jeremy Sims

says:

Thank you Beth. My kids are lucky to have you and so many of our great teachers in their lives! And most certainly, as am I.

Sharon

says:

Wow! I can’t believe it has been a year! Can’t wait til the next blog every week. You are Awesome!

I am so glad you accepted this challenge because it has been a journey of unknowns where it might lead me. You have provided many different perspections of discovery from your view & allowed us a deeper introspection of you & ourselves in your shoes.

I can now pray for Tiff & family better because you have shared your heart & soul; your love & pain; & God’s grace & mercy to me. A year on a road well traveled & journaled by you my friend, my nephew!

Love All of You so much!❤❤❤️

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