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Life Defined: Why I Love Steve

 

unnamed-2Of 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.

 

 

With hope,

 

Bo

September 22, 2014 - 9:00 am

Sunny Hisel - Bo, my first memory of Steve is the first time he shared with the congregation at Westside Church. I saw a man larger than life so boldly and passionately sharing the word of God he almost blew up the microphone :) It drove the sound guys crazy! Sunny

September 22, 2014 - 9:35 am

Deb Teeken - Bo,

Your story this morning made me chuckle and brought a huge smile across my face! Why? Because it brought back a moment that I remembered from the ALS walk. Steve was listening intently to a story that friends were telling him, and in his quiet, sweet voice, he cracked a very funny, one-liner in response to their story. Witnessing the exchange and the twinkle in his eyes touched my soul, as it was like he gave us all….permission to lighten up!

September 22, 2014 - 10:18 am

Jane Lellman - The showers were such hard work, but I miss them. I really did love getting Jim clean and comfortable or all spruced up, as he would say. There certainly are things ALS can’t take, but they absolutely get hidden between and behind all the ALS related kerfuffle! Thanks for the reminder of the essential truth! He was not ALS Jim, he was Jim. Once after we finished a shower, which included him getting squeaky clean and me getting wet, he looked up with a smile at me dripping and typed “and a good time was had by all” which has been a life long catch phrase for him.

September 22, 2014 - 10:28 am

Cindi Dunn - Hi Bo & Steve…your blog today reminded me of something that happened last week that I had meant to write to you and then got distracted. I can’t remember exactly which early am it was, but somewhere between Tues (9/16 & 9/18) and Thursday, I was awake at about 3 am, and thought of you both as I often do, and your “night shift”…and was praying for you, when the LORD reminded me of the story of David, when he was thirsty & longed for a drink from the well in Bethlehem (had to look up the reference, 2 Samuel 23: 14-17) and his 3 mighty men go and attack the Philistine army and brought water out of that well, to David…anyway, David was so aware of the sacrifice that they had made for him, that instead of drinking the water, he poured it out, “to the LORD”…and somehow…don’t know if I can make this make sense to anyone but me or not, but what He told me in that moment, was that the water was Steve. Too precious…too valuable…that his life is being “lavishly wasted” and poured out for the LORD….I love you…hope this blesses your heart the way it did mine! It is an honor to know you and pray for you both! :-)

September 22, 2014 - 10:49 am

Susan David - When I was visiting last week I caught those glimpses of Steve all the time. The one that made us both laugh out loud was when I was just getting reading to pour his “lunch” into the feeding tube and he went “Boo”. I jumped and he laughed! I was so nervous about spilling his lunch on his lap that I was really consentrating and he saw an opportunity to catch me off guard!!! I still laugh about that. Steve never misses an opportunity to tease someone or bring a smile to their faces. Again, sure wish I lived closer!!! I pray for more strength for you and Steve daily!

September 22, 2014 - 11:29 am

William Hummer - 9/22/14
THANKS for sharing the most intimate details. It must be very difficult and yet the most rewarding LOVE relationship. I can’t understand it all but I do know that your love for each other is very real, genuine, and authentic. Please keep writing. The beautiful colors come through and I can hear the music and melody of true love.

Sincerely,
William Hummer
Danville, Illinois

My Birthday Words

 

 

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.

 

 

September 18, 2014 - 2:46 pm

Teresa B. - Happy birthday dear Bo! I do hope and pray that our Lord brings you exactly what you want: Exuberant Expectation :)

September 18, 2014 - 3:41 pm

Cathy Wood - Bo I know I’ve only known you for a few moments in person but you are so dear to my heart. You have touched my children’s lives. And there have been so many of your blogs and teachings that have touched my husband’s and my hearts. So with true love in my heart I say Amen and will be agreeing with God with exuberant expectation (love those words)!!! Believing for the best things straight from God’s heart for you and Steve and family! With love, Cathy Wood

September 20, 2014 - 8:28 am

Jody Lee Collins - Bo, your perspective is perfect…and makes me think ‘wow, God.’
And your words about writing well, I just might steal them.

50 looks beautiful on you.

Jody (friend of Gwen’s) Collins

September 22, 2014 - 10:17 am

Jenny - I love your two words so much. They don’t make sense and that’s what makes them awesome and from God. I hope you had a memorable birthday Bo Stern! Much love and prayers to you daily!

6 Things Your Friends in Crisis Wish You Knew

 

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,

 

 

Bo

 

 

 

September 12, 2014 - 10:26 am

Kim Fears - Bo- Please know that I am passing this blog on to my mom who is struggling with some of these things. Since Dad’s ALS diagnosis she’s had those bad days and often felt guilty after her short answers to people. I’m pretty sure you’ve heard this from many different people but you are really a great inspiration. I pray that God gives me 1/8 of your grace every day. I’m reading Ruthless right now and have Beautiful Battlefields on the way. Thank you for sharing your life!

Kim Fears

September 12, 2014 - 10:35 am

Joyce Strong - Thank you Bo for opening up and putting your thoughts into words so I don’t absentmindedly put an extra weight on friends. I have a close friend who lives in Pasco WA. She had breast cancer in “07. It came back a year ago. Recently she learned it has progressed further. I spoke to her, then, immediately sent her my copy of Beautiful Battlefields. She said it’s been extremely helpful. Thanks for leading my friend to a closer walk with Jesus!

September 12, 2014 - 11:24 am

Rachel - You wrote my words! I SO relate to the six points that you make. In my case, it can be the pregnancy announcements, scan photos, baby photos, that I rejoice with my friends for and cry for my empty womb, all at the same time. There are definitely times (and places!) for talking about it and not talking about it. With a more long term battle, it can feel like it’s old news to keep sharing about it. I also live with MS. I like the normality of being able to share with my friends as before. I never want them to feel that they can’t share their struggles and battles, never want them to stay silent because they consider my battles worse. Generally, I’m tired of answers. Hence the title of my blog! Questions seem more appropriate to my journey of discovery and the process of fighting the battle. Thanks so much for this article. I’ll share it on Twitter and on my facebook page.

September 12, 2014 - 11:55 am

Debbie - Thank you for these suggestions. With two friends battling cancer right now, they’re very meaningful to me. You have great insight.

September 12, 2014 - 1:06 pm

Tammy A - From one soldier to another: I love you dearly forever.

September 12, 2014 - 2:48 pm

Debbie - Thank you so much Bo. Just what this mom’s weary heart needed. Life can be so hard but God is so good.

September 15, 2014 - 5:30 am

tea - Thank you for putting in to words exactly how I feel as well, regarding the battle I’m in (disabled husband). I am amazed and inspired by how eloquently you were able to communicate what it’s like. In my journey I often think of Job’s friends and thank the Lord for allowing me to know that Job had friends who probably had good intentions…but they were actually making it worse for Job. I thank the Lord for reminding me over and over again that He is the one who sticks closer than a brother! Proverbs 18:24

September 16, 2014 - 7:06 pm

Lynn - Everyone of your points is spot on! I had the exact feelings. # 6 was an especially hard one and there have actually been some broken hearts over the situation at the time. I think of you and the other “girls” so often. March on through this battle knowing that so many love you!

September 17, 2014 - 7:33 pm

Nikki - Thank you for re-posting this. My family has currently had our little world turned upside down. #1 resonates quite strongly with me at the moment. I don’t feel myself anymore and wish I could just be happy for all my friends and family that aren’t suffering like we are, but instead I feel insane jealousy. It hurts to hear them complain and stress over the simplest things. If only they knew the stress I carry on my shoulders. It hurts to see others living the life I used to have.

September 22, 2014 - 11:54 am

Dee - Thank you for writing this. As a fellow sojourner in this deep-water battle, it brought clarity and understanding as to why we feel the way we do. We lost our precious granddaughter recently and it has been devastatingly hard. I had to stop FB because all our friends post pics of their grandkids; went to a baby shower and had to leave when I felt the grace was up – cried all the way home. You put it so beautifully that it is my heartache, no one’s fault and that I just need room to breathe. I am now praying for you and your family daily, and standing with you in your battle. God bless.

Backstory: My Dance with Steve

 

 

One of the most miraculous things to come out of our ALS Fancy Dance was this photo.

 

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#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.

 

 

With hope,

 

Bo

 

 

 

September 4, 2014 - 8:11 am

Stephanie - Who needs mascara? Or words? I have no mascara left, and no words. Ya’ll have such a beautiful and courageous love; it’s truly incredible!

September 4, 2014 - 8:20 am

Raechel Brady - You are such a beautiful writer. Thank you for sharing your journey with us…peace to you and your family.

September 4, 2014 - 8:28 am

Karla - Crying, cheering, jumping up and down, crying more… This is my all time favorite blog of yours. Love it for so many reasons. Blessings to both of you! Keep dancing!

September 4, 2014 - 8:36 am

Sue Hendrickson - Beautiful. ..

September 4, 2014 - 8:44 am

Debbie Dunham - Beautifully written and the picture is amazing.

September 4, 2014 - 8:47 am

Anonymous - Thank you for your naked honesty, Bo. I hope to meet you someday to thank you in person. I feel like an interloper reading your blog without an introduction. However, in a strange way, I feel as though we have a connection …

I too have lived through a husband with a terminal illness and all the sleeplessness, anger, endless comforting and educating, cheerleading, fear, exhaustion, resentment and painful intimacy of a kind that can only be understood by spouses who have had to step up to provide the kind of life-saving and comfort care you describe. When you have traveled this road – the road you are on now – you hopefully learn that God has ways of speaking to you and reminding you you are not alone. Sometimes in strange ways, in unexpected places.

I know there are moments of dark humor and reflection and personal growth along the way. Our reltionship stretched to meet the requirements of the day with me always trying to straddle the line between being a loving wife, respecting my husband’s personhood and ability to express his own opinion, and the inner-drill sargaent I had had to become to keep this chaotic world I was living in semi-organized and “on track” (whatever that meant!). I had no path to follow and no caregiver support network. I just functioned and figured it out and dang near wrecked my own health in the process.

My husband was a pretty easy going guy at heart, which helped somewhat. I also have an ICU background which really helped with navigating and wrangling the medical world we found ourselves in for about a year. I remember finding gratitude in some crazy places ( a very full bedside comode after days of waiting for my husband to have a BM, for example). Now that I think of it, kind of reminds me of those “easter eggs” software developers and filmmakers put into their work for the eagle-eyed to discover. I am sure I missed a few “eggs” along the way.

Oh Bo, you are an exquisite writer. Thank you for sharing your lessons, especially those about marriage. The only time I usually hear people talking openly about marriage struggles is when they’re headed toward divorce. Baloney. That’s the easy way out. I think. Marriage is not only HARD. In my opinion (thrice married to boot so I feel fairly qualified to speak on this topic!) it is DAMN HARD. The romance novel moments come few and far between once you launch into ordinary life – children, mortgage, family obligations, finances, work. Throw a curveball in like a terminal or chronic illnes and… Whew!

When anything goes sideways with any and all of the afore mentioned, the poo can hit the ol’ rotating oscilator. What gets you through is raw determination to stick to your commitment, or in a line from one of my favorite off-Broadway musicals states “Make like a nail and… PRESS ON.”

We just have to press on, don’t we? After all, the alternative sucks. I am currently married, madly and passionately in love with my darlin’, a man who has given me the highest highs and the lowest lows of my life in our 12 years together. I am 55 and he is a scrappy, handsome, strong 83. I would not trade him for all the tea (Black Butte Porter?) in the world. But it occurs to me that the odds are I will bury him one day. Having done that once. I guess the ground is familiar, although the journey there – if that’s how it pans out – is constantly unfolding. Today we are both healthy, in high spirits, on a trip to the Olympic Peninsula. Car trips are always delightful – we talk and laugh and talk and share adventures.

I treasure each moment. This has become my mission – to remind people in my sphere that moments count, especially when illness strikes and ultimately moments are all you have. Every vacation memory and pic is a reminder that my husband/best buddy and I thrive together. I am the keeper of all the memories and on random occasions will pull out a photo album, play a Facebook slideshow. He doesn’t remember the details I do and, in fact, sometimes challenges facts, I think, just to be persnickety. Then I produce the photo evidence and VOILA! Vindication :) I pray that no matter what life deals us, his memory will stay intact so we can always reminisce (at least that he will remember things to the standard dude-level that he does now!)

Anyway, Bo, thank you for indulging this very long comment. Thank you again. Your honesty, determination and love shine through, no matter the story you are telling.

September 4, 2014 - 8:55 am

Shell - Bo- Always humbled, inspired, moved, grateful, reminded and always prayerfully lifting both Steve and your beautifully transparent souls up to God! Blessings to you! Sending big hugs

September 4, 2014 - 9:07 am

Carol - If ever I understood the expression, “too beautiful for words,” this would be that moment. Thank you, Bo, for these honest and transparent words. I am blessed.

September 4, 2014 - 9:39 am

Amy - Bo, thank you so much for your incredible honesty. You & Steve are such an inspiration to everyone that knows you, both in real life & through your powerful words & story.

September 4, 2014 - 10:15 am

Sue McAdam - Bo and Steve, what an awesome picture and beautiful words. Through tough times and adversity you have and will continue to have each others love and God’s mercy and abiding love. My prayers for both of you…..as I’m crying my eyes out. Such a beautiful picture of God holding both of you. Thank you so much for sharing.

September 4, 2014 - 10:23 am

Kristen Lunceford - Sobbing at my desk over this with snot dripping into my coffee. TMI? Whatever, man. #yourfault

Thank you for choosing all those years ago to write your way through this. You could’ve buried your gift beneath your sorrow and excused it away a million times over, but you didn’t and you haven’t and you won’t and we are all braver for it.

September 4, 2014 - 11:19 am

Sherri Gragg - Amen.

September 4, 2014 - 11:52 am

Tiffany - Beautiful words, beautiful, heart-stopping photo — I’ve heard your name, and I’ve prayed for you. I only realized recently that Bo is who I knew as Bonnie, so long ago! What a sweet surprise. Blessings to you sweet lady.

September 4, 2014 - 1:16 pm

Melinda Hohenberger - You do not know how much I needed to hear this….we are also going on our thirtieth. I have a awesome spouse, too. But marriage, kids and family gets messy at times….

Praise God for grace so amazing and love so Devine. O, what a Savior….please know that you and your family are on my continuos prayer list if that is the correct terminology. It is a blessing and honor to pray for Team Stern.

He gives us beauty for ashes….

September 4, 2014 - 4:24 pm

Jeannie - I love you, Bo!!

September 4, 2014 - 5:32 pm

Wanda - Bo,
I am grateful for the IceBucketChallenge because it spurred me to research ALS and discovered Steve and Bo’s Story. I am currently reading Beautiful Battlefields after reading through your daily blogs. I have also signed up to received the blog daily via email.
This blog, like most, hit close to home-my high school sweetheart, husband of almost 37 years passed away July 2013, age 59 from Amyloidosis, rare and incurable to date. Though prognosis was less than 2 years we had 6.5 years to love and grow in our faith.
God Bless You and Yours!!

September 4, 2014 - 6:01 pm

Jacquelyn Strayer - …….no words……….

September 4, 2014 - 7:01 pm

Debbie - Thanks for sharing the picture and your feelings – you are an awesome person.

September 4, 2014 - 9:18 pm

Mychal Wagner - Thank you, thank you,…I feel honored , truly, to somehow be in a position to feel your life in such a beautiful moment as if the culmination of your marriage was captured in 60 seconds, and that moment you shared May be the light that my marriage was desperately in hope of, from the bottom of my heart . You saved my marriage… Thank you

September 5, 2014 - 7:33 am

Jeannie Robey - Thank you Bo for sharing your story! I have heard you speak many times at church and retreats and have come away with a whole new out look on my life, God and every thing in between!! I have always said you are an amazing women but that was an under statement after I read this blog!!! Every married women needs to read this. You have shown the true meaning of marriage here! The picture is priceless!! Your family is in my prays!!!

September 5, 2014 - 9:36 am

Jerri Gwen Carter - My heart and mind is changed forever. A Sweetness is in the picture that will stay with me. You look like newlyweds! I’m so grateful that I have been given the opportunity to get a glimpse into your lives. Thanks and God Bless you both through your journey.

September 5, 2014 - 9:23 pm

dodie - When I saw the picture, my heart leaped for joy. As soon as I began to read, Danny and I were in the car and I began to sob. I couldn’t finish at that moment. I just shut my phone and vowed to get to it later. I did and am crying again. Your love is so great. It’s how legends are made. Your words are life giving and encouragement to each and every one of us. You speak truth and I am so thankful and honored to know both of you. All my love.

September 6, 2014 - 11:50 pm

Rachel - Such a beautiful post and a testament to true love…a love that’s real because reality involves tough times and joyful times and everything in between. Thank you for sharing your story in such a beautiful way. I’m thankful for this moment of joy you could share with your husband in the midst of the tough times. Prayers for you and your family as you walk this road!

September 9, 2014 - 11:20 am

Joyce Bromps - You don’t know me, but I follow your blog. Just heard a yearningly beautiful song that I want to share with you. Go to Brooklyn Tabernacle webcast, Sept 7, and start listening at 42.40. Blessings!

September 9, 2014 - 2:43 pm

Laurie - oh Bo! Thats so touching. You guys are so amazing.

September 12, 2014 - 8:54 am

Randy Moyer - As many others have already expressed I read your post through tears, laughter, and hope all mixed together. I am starting my life with ALS, diagnosed in January 2014, and so far things seem to be moving ahead slowly. I am also caregiver for my wife who has a severe back issue which has kept her bedridden for the past four months. The feelings of taking care of her is the majority of the time no big deal and I do it with compassion, however there are times where I wonder how much longer I will be able to continue caring for her and deal with the ALS. We are serving the Lord in France, away from our family, even though our church family has been there for us, we still miss our five grandchildren and their parents. I am so thankful that you have expressed your difficulties and your husbands as you rely on the Lord to get you through. My life verse has been, 2 Corinthians 12:10, when I am weak then I am strong. God has never been closer since I was diagnosed and if this is what it took to help me see how close He is than I’ll celebrate my ALS with peace and joy that only He can give me. God bless you and your family, and keep the sharing your heart so that others like me can benefit from what God is teaching you. Randy

We Danced All Night to the Best Song Ever

 

 

I remember the day that Victoria came home and said, “When I tell people about dad, I can tell they think we’re a tragedy.”

 

 

I knew exactly what she meant.  I saw it in their faces, too: horror, sadness, fear.  I felt the very same things when those three letters were slapped onto Steve’s future.

 

 

But the thing is:  we’re not a tragedy.

 

 

We’re a triumph (and so are you).   We’re a spectacle of love-against-the-odds and irrational hope and unlikely joy.  My family – out in front where you can see them, and also behind the scenes where you can’t – lives a fairly never-ending dance of joy and sorrow.  I will tell you honestly that holding onto happiness has been the most difficult thing we’ve ever done.  Some days, it’s a fight to the finish and some days it’s as natural as breathing, but every day it’s worth the work.

 

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Alive, loved, satisfied is not just our hashtag.  It’s our strategy for survival.  It’s tattooed on my kids’ arms because it’s a motto that will never change.  The nature of our battles will change, the faces of our Goliaths will change,  but our marching orders will stand.

{Happiness = knowing that we are alive, loved and satisfied.}

 

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When we started planning a fundraiser-within-a-fundraiser (to raise money for our Walk to Defeat ALS team which benefits the ALS Association), we dreamed of an event that was soaked in hope and vibrant with victory. We wanted it to be fun.  And fancy.  And we wanted it to be everything that ALS is not.  In fact, we wanted it to spit right into the face of ALS.

 

 

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Thus, the event that shall henceforth be known as the ALS Fancy Dance.

 

 

 

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We gathered at a beautiful place.

 

 

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With beautiful people.

 

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And there, beneath the starry sky, we danced in the face of fear and frustration.

 

 

 

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We danced, remembering Debi’s dear husband, Randy.

 

 

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And Barb’s dear brother, Randy.

 

 

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And Buck’s sweet sister, Kay.

 

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And we danced for Steve and all those who cannot.

 

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We danced for hope.

 

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And for the dream of a future where the cure is common and the disease is rare.

 

 

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But mostly we danced because we are not a tragedy.

 

 

 

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And life – no matter how treacherous – is still more beautiful than we ever dreamed.

 

 

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Thank you to all who came and danced and hugged and ate and drank and gave.

 

 

{It’s not to soon to Save the Date: September 4, 2015.}

 

 

 

With hope,

 

Bo

 

 

P.S.  We have so far raised just over $16,000 for the Walk to Defeat ALS.  It’s not too late to donate or walk with us this Saturday, September 6 in Central Oregon.  ALSO – I hope this week to write a post addressing some of the reasons why we support the work of the ALS Association and to at least give you my take on the criticism that’s been swirling through the news recently. Stay tuned…

 

To see lots more fun pictures of the dance, check out our Instagram hashtag #ALSfancydance14.

 

 

 

 

 

September 2, 2014 - 12:27 am

Debra - This is so beautiful your story still brings me to tears. The love i see in front of me is so amazing thru this ordeal your all facing. I send you much love ,hugs and most of all support to keep going it will never end in vain.

September 2, 2014 - 8:14 pm

Kristin Motter - Love your most recent blog! Love that you all share joy and hope and love! My prayers and thoughts continue to be with you.

September 4, 2014 - 2:37 am

Jandra - Oh Bo, it’s just so beautiful.