I recently talked to a woman who has been estranged from her father for many years. Her totally healthy father. She wasn’t abused or yelled at. She just wasn’t much seen at all. The story of her dad’s parenting could almost be told in one sentence, “He did nothing particularly bad and nothing significantly good.” He tried to add a daughter into his life without stepping into hers. He missed a chance to build and encourage her. Actually, he missed a million chances. Daily chances. And he missed nearly every opportunity to protect her from boys who also wanted to make her an accessory to their lives, but not a prize.
Similar stories are everywhere. I know that Dads are a popular scapegoat, and I’m not looking to castigate them here, but I will say: I believe the dad/daughter relationship is one of the most important and foundational elements to our well being as women. Our dads have the ability to teach without words. Regardless of their educational background, vocational success or communication techniques, they constantly teach us (maybe more than anyone) about our own worth as women. They teach us about beauty and how men view it. They teach us about body image and sexuality and marriage and safety and commitment. It’s ironic that men – who I think feel WAY in over their heads communicating to women – are holding so many of the cards when it comes to their daughters.
Today, I’m grateful for two things.
I’m so thankful for this guy and the way he’s fathered his girls.
The way he’s seen their unique beauty and helped them see it, too. The way he’s shown them Jesus and strong leadership and love. The way he has taken care of their cars and killed the spiders and protected them from danger – sometimes the kind of danger that only a dad can see.
And even though he can’t do all those things with them now, he’s still their dad. His investment stands in their lives and their love for him is obvious and outrageous. None of our three girls feels qualified or capable of being a caregiver (we’re all a little weak-stomached that way), but all of them have gladly stepped into that role with their dad. They tackle the hard stuff without a single word of complaint. He’s earned their trust, respect, love – and now he receives their compassion and care and it’s a beautiful, humbling thing to watch.
So, that’s the first thing. The second thing I’m thankful for today is my friend, Michelle Watson, and her new book: Dad, Here’s What I Really Need From You. Michelle is a therapist whose specialty is the dad/daughter relationship. She leads groups of men through field training in how to improve their connection with their daughters and establish beautiful relationships. This book is written for men, in a way that men will enjoy. Michelle does not take cheap shots or ridicule or condescend. She respects men and the role they fill and her writing proves it.
If you are a dad or know a dad struggling to connect with his daughter, grab this book. You won’t be sorry. Not ever.
Of all the things in the land of caregiving that make me feel uncomfortable and inadequate, showers are the worst. I dread it every time. Steve is still much bigger than I am and he is mostly dead weight. The floor is hard and slippery, falls are dangerous, he gets very cold and shaky very quickly so I have move fast. All these things make it my least favorite, most worrisome job.
Yesterday, we stayed home from church and tackled the shower in the afternoon. This time, it went like clockwork. I did my job fast, nothing crazy happened and when I got him safely deposited back in his wheelchair, dressed and warm, I felt this little adrenaline rush like I had just won an Olympic gold in showering or something. As I was finishing up, he said something I didn’t understand. I asked him to repeat it, and he smiled at me, blue eyes twinkling, and said, “All dolled up and no place to go.”
And I don’t even know why, but it was the best thing in my day. Maybe just because he is the best thing in my life and it’s easy to forget how much he’s enduring until I see a spark of how he used to be. Because for all my talk about how hard it is for me to do showers, I simply cannot imagine how difficult it must be for him. To live inside a body that’s betrayed you, to put all your faith in a little woman who doesn’t handle pressure very gracefully, to die to your dignity, to silence the part of your heart that’s wired up to care for your family and let them care for you instead – I can’t even guess what this one thing is costing him. And it’s just one thing.
But through all these things, I get these little glimpses of the real Steve. The one who makes his temporary home inside that failing body. The one who focuses most of his energy on trying to get through each day right now, but is secretly filled with more wisdom, compassion, kindness and fun than anyone I know. He’s the one who has the exact right answer to “Do I look fat in this?” (I won’t tell you the answer, but it’s awesome.) He’s the one who could teach just about anyone to shave ten strokes from their golf score in one lesson. He’s the one who sat on the floor outside Whitney’s bedroom door for hours on the first night we took away her pacifier, knowing she’d need to cry it out for awhile, but not wanting her to cry alone. He’s the one who prays his family through the toughest seasons. He’s the one who meets with men who need help with things much more important than birdies and bogies. He’s the one who wasn’t able to venture out to a restaurant with us on Friday night, but sent along his credit card because he still wanted to buy his family dinner.
He is all these things and I could list a hundred more. There are things ALS can take away and things ALS can’t take away – but there are also these things that it can’t take but can hide. I suspect that the most important job I have in this process is to keep reminding myself of who Steve really is. Not ALS Steve. Just Steve. Amazing, strong, wonderful Steve. And to help the rest of the world remember too. And, most of all, to help Steve remember that we remember. Because a life well-lived cannot be defined by three dumb letters. It cannot be reduced to a diagnosis or a condition or a failure or whatever else swoops in and wants to label a person Over and Done before they’re actually over and done.
All dolled up and no place to go. Man, I love that guy.
Birthdays are not my favorite. It’s not about getting old, I like getting old. it’s not even that they’re bad at all. They’ve just never really been my thing.
This birthday, however, this year that hangs in the balance between two decades of my life, feels significant. it has a gravitational pull that sometimes feels weighty and secure, but usually feels more scary than anything else. I’m not afraid of aging, but I’m afraid of some of the question marks lurking there in the hallways of 49.
For as long as I can remember, when I’ve needed a sense of certainty about anything, I attach words to it. Words are like anchors, connecting lofty and ethereal thoughts, dreams, fears and grocery lists to the solid ground of real life. I pull these nameless, faceless feelings out of the air around my head and paint colors onto them with words so that I can know what I’m really dealing with and at least a little more about who I really am.
I did that this morning with year 49. I pegged two words to the coming year and I’m telling you right now, they don’t make sense. In fact, they are so incongruent with my life circumstances that I kept sending them back to the pile and fishing for new ones. But these two words – these strong, scrappy words keep popping their heads up out of the fray and demanding to be seen, noticed…and attached to the days and weeks and wonder that lies ahead.
There’s a little terror in my fingers typing them out, but they are: exuberant expectation.
Though life feels soaked in sorrow right now and my heart and hands are trembling from the weight of it all, I am daring to believe that these are my words.
Exuberant expectation for:
- a life lived honestly
- greater intimacy with the God and people dearest to me, birthed out of necessity and fueled by grace
- new ideas and dreams and crazy schemes
- the legacy being lived out by my children
- and even…exuberant expectation for Steve and wherever the road ahead leads him – healing or heaven – I am determined that I will live with hope and expectation for the future God has planned for that wonderful man.
Tomorrow is my birthday. Those are my words.
Bring it, 49. I’m ready for you.
I wrote this list two years ago, but it’s just as true today. I’m re-running it since the topic has come up so much recently and have added an important sixth point at the end.
Let me start by saying: I certainly do not speak for everyone in crisis. There are a million different kinds of people and a million different kinds of battle. I’ve tried to stick to things I’ve heard many times from many people, but this list reflects my
two four years in the trenches more than anything else.
1. Sometimes your life is hard to look at. I will try to attend your daughter’s wedding and I will be so happy for her. But I will look away when her father walks her down the aisle and I will leave before the daddy-daughter dance. These things are too much for me. I’m not mad; I’m just swimming through some deep-water feelings about the future. I don’t need hugs or help; I just need a little room to breathe and none of it is your fault. This is my heartache. For some, it’s seeing an anniversary celebration on facebook, or flirtatious banter between a husband and wife. For others, it’s witnessing the baby milestone while imagining how old their own would be. Different things are difficult for different people, just know that while we love you, sometimes your world is hard to look at. We know you have problems, too, and we’re not jealous of your life – we’re jealous for the life we used to have before our battle broke out (or the life we’re wishing for that hasn’t quite started yet). Action point for armies: don’t stop inviting us into your lives, but give us grace when we need to look away for a bit.
2. How much we feel like talking about our battle can vary wildly. Some days are very difficult and so I will answer questions abruptly in order to save us both from my messy emotional breakdown. Some days it’s very cathartic to talk about it. So, how can you as my friend, know which day it is? You can’t. And this is when it’s hard to be you (and I’m sorry); but what you can do is ask: “How are things with Steve?” followed up immediately by, “I understand if you’d rather not talk about it.” Perfect. You’ve shown me you care and also given me an easy exit should I choose to use it. And let me add – even when I don’t feel I can give a detailed answer, it really does matter to me that people ask. (So thank you, sweet friends, for the question. And thank you for understanding when I can’t linger over the answer.)
3. We’re secretly afraid you’ll grow weary and disappear. We don’t fear it because we doubt your character, we fear it because we would probably choose to leave our battlefield too, if given the option. Through tears, I type this: I can’t imagine what I would do if I lost my friends as well. I just can’t imagine. I know so many people who run out of steam in supporting a friend and then they’re embarrassed to step back into the battle again. Don’t be embarrassed…just give a call and say, “I miss you. Can I bring over some mac and cheese?”
4. We still want to fight for you, too. Don’t stop telling us what you’re going through, don’t stop asking us to pray. It gives me comfort to know I’m not the only one in a fierce fight and it gives me courage to know that I still have something to offer the world outside my war.
5. We love you. And we’d be lost without your friendship. Even when we lack the strength to say it or show it, please just know it.
6. We don’t need answers as much as we need you. Everyone who deals with a difficult diagnosis also deals with a landslide of medical advice from friends, acquaintances and complete strangers. It’s exhausting. I’m working really hard to get through the demands of each day – taking time to read a book about a miracle cure that Steve’s doctor has never heard about is, honestly, just not an option right now. I have a small group of trusted advisers who have tackled some of that research for me and made recommendations based on their findings, but we cannot pursue every option out there and I sometimes feel people are frustrated with me for not trying their suggestions. Action point for armies is simple: extend advice cautiously, if at all, and make sure that your friend knows you’ll love them whether or not they try what you’re suggesting.
Comments are open – I’d love to hear thoughts from both sides of the battle.
With hope and gratitude for the army that fights for us,
One of the most miraculous things to come out of our ALS Fancy Dance was this photo.
#ALSfancydance14 Photo cred: Joe Earwicker
Miraculous, because I didn’t think Steve would be able to get out of his wheelchair at all that night. It never occurred to me that he would even try – so this moment was entirely spontaneous and, on his part, unbelievably brave. Dancing with my sweetheart to You Are The Best Thing will live forever in my memory as one of the most beautiful, meaningful sixty seconds of my life. I’m so glad some quick-thinking friends grabbed their cameras and captured it because behind every photo are layers and layers of life. The picture shows one story, created from many, woven together and wedged into a 3×5 frame.
The story behind the story is this: Marriage is hard. We are on year thirty and I will tell you honestly that there were some seasons when we didn’t know how we would go on. We knew we would go on – we’re both too stubborn to quit – but we didn’t have the first clue how. Hard times and dark nights conspired to sink our ship. Kids and money and mortgages and distractions and failures circle like vultures around even the stoutest hearts and surest vows. We have not been immune to these things, nor have we handled them perfectly. But I’m learning that the beauty in marriage is not in doing it perfectly, but in responding to the imperfections with grace and grit. It’s in the getting up and trying again, believing again, hoping again, dancing again. That’s where the real magic is.
Also? Terminal illness is hard. It’s hard on relationships. Hard on romance. Hard on expectations. Just really so hard in so many ways I could never have imagined before we walked the road. For much of our quick spin on the dance floor, I helped to hold Steve steady while simultaneously sobbing into his chest. And I have never felt more privileged or qualified to do anything in my whole life. But at 3:00 a.m. when I am emptying the suction machine and fixing his covers for the third time and wondering if I’ll ever sleep through the night again, I do not always feel privileged. And many times, Steve can feel it, too – he feels, not through my words but through my way, that his needs are an intrusion on my life. Caring for him is the greatest honor, it really is, but I would be lying to say I feel that way 100% of the time. As much as I’d like you to believe I have figured this thing out, the truth of it is that sometimes I feel selfish, suffocated and entirely insufficient for the job. As I was writing this post, Steve had a crisis choking situation and I rescued him (and I know rescued is a dramatic word; believe me when I say it’s the right one) with shaking hands and frantic prayers and I did not in that moment feel at all qualified. I felt desperately in over my head and hopelessly inadequate to care for a frail body with so many needs. This is our reality. Terminal or chronic illness is hard and I understand why many couples don’t survive it. That we have survived, and in so many ways are healthier relationally than we have ever been. is not a feather in our cap - it is a testimony to the sustaining power of God and to the ways His grace smoothes and softens selfish hearts and holds us up when we’ve done all we know to stand and still can’t get our legs to work.
When I look at this picture, I see a third pair of arms. While I am holding Steve up, I am being carried by a bigger God than I knew existed before I needed Him this much – and also by Steve, who has not stopped loving and caring and cheering for me during his battle with ALS. Turns out you don’t need strong arms to hold your wife’s heart. He is just as strong for me as he has always been and that’s why he’s my hero.
The stories behind it make this photo a miracle because it is life that snuck through our dying. It is joy that seeped through our sorrow. It is hope in heartache. The love you see is every bit real, but it is not perfect or polished or even particularly brave. It’s mostly just rugged survival, fueled by the relentless mercy of Jesus Christ. That’s marriage.
And that’s a miracle.