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Life Underwater

 

You are here.

 

That’s the sign I’d like to see right now, on the big map of our lives. But there’s no red arrow to be found. All I know for sure is, we are where we are. Steve has taken a swift, significant downturn this week. I’ve only left our house in small, measured doses of time – to take Josiah to the church for camp, to pick up something our caregiver needed, to run a quick errand – and each time I walk out the door I feel like a deep sea diver, coming up for air.  I don’t realize how dark the deep sea is until I see the light of day and remember Oh, that’s right – sun!  But I also value my place underwater. In spite of all my misgivings and inadequacies as a caregiver, I can finally say: I know what I’m doing down here. I feel more at home than I’ve ever felt and for the first time I’m starting to wonder how I’ll adjust to life on land.

 

My sister and brother-in-law have moved into our guest room this week, to help me with a million things. Having them here has been so wonderful for both me and the kids that it makes me realize I probably waited too long to ask for help.  I probably always wait too long.

 

I have learned to take comfort in the craziest things: The glub-glub whirring of the oxygen machine, the color of the pink cocktail of meds that I put through Steve’s tube to help him feel better, the smell of coffee brewing after a long night spent mostly in a chair by his bed. Most of all, I take comfort in the faces of our kids when they walk through the door. Kids coming home. Life. Hope. Legacy. Living, breathing pieces of Steve.  They keep me both grounded and going.

 

I know you want to know how Steve is doing, how he is feeling. I don’t feel comfortable telling his story to the world right now. Maybe someday, but not now.  I will say this: His words are measured and sacred and, more often than not, they are about the goodness of God or his love for one of us. No joke, we are tired.  I mean – bone-weary, soul-deep exhausted. Him, me and our team.  Steve is weary from sickness, the rest of us from stress, sorrow and the physical requirements of caring for someone so fragile. This disease is merciless…but God. He is rich in mercy and abundant in grace that is stronger than the grave. Our home is full of it.  So full, in fact, that every time I lay down and close my eyes I get butterflies in my stomach because I can feel the Holy Spirit breathing so close to me. I’ve never been more convinced that He is near to the brokenhearted, pouring out new strength every. Single. Morning.  And I’ve never been more grateful.

 

You guys, this life?  Is short and hard.  But it is beautiful. I don’t have to say that as a condition of my faith, I have to say it because it’s my only certain reality right now. God is good. His love is the wonder of our world. His companionship has been flawless. We are held and we are His.

 

With hope,

 

Bo for Team Stern

 

P.S.  Thank you so much for your notes, prayers, gift cards, meals. We are beyond grateful and all the way to astounded.  Not having to worry about cooking and cleaning has been a great blessing these past few days. If you’d like to be included on the email updates Whitney sends out to let our army know when we need help, you can send your email address to whitneyparnell@gmail.com.  We love you.

July 18, 2015 - 8:18 am

Debbie - Praying for you, Bo, and thanking God that everything you’ve said about Him is true. He is there, in all of His beauty. Grace and peace to you all!

July 18, 2015 - 8:39 am

David Chown - “I’m starting to wonder how I’ll adjust to life on land.” So true. Judy was her mom’s only caregiver 24/7 for almost two years. When she passed a few weeks ago that is exactly how Judy felt. “What do I do now?” We are still figuring that out but we will get there. Not much to say but we love you, we are praying for you, and thank you for being so vulnerable, open and “out there”.

July 18, 2015 - 8:42 am

Vangi Taron - Oh, Bo. I love you. And I’ve said it before, but today I feel it fresh: Thank you so so much for sharing with us. I had the thought after I read this amazing post, “Wow, what can I say to be a friend and a blessing right now — I just don’t even know if I can come up with words at such a deep time of sorrow and struggle and beauty…” And then I realized: you did. In the depths and the face of all that you and yours are facing, you took the time to put it into a frame and give it to us. I know that writing is somewhat its own therapy, but I have to imagine that, at a time like this, it would still require a significant effort. But you chose to make the effort and bring us along. And in the process, bless and encourage and strengthen us. I’m so thankful for that — and for being, in a small way, in the mix of this together with you. No one should go it alone. I’m so glad for the help and the friends and the support that surrounds you — and mostly, for Holy Spirit’s presence that you so beautifully described. Praying, praying, praying, my dear, dear Bo.

July 18, 2015 - 8:45 am

Steven Phillips - Bo,

I don’t have much in the way of words. The two things I offer to you and your family right now are my prayers and some verses from the Bible that I hope will not come across as platitudes in the midst of your struggle.

Like you, I really believe, but I must sometimes pursue my refuge in Him and His words help me find my way there in the deep dark waters of our suffering.

Taste and see that the LORD is good; blessed is the one who takes refuge in him (Ps 34:8).

For the LORD is good. His unfailing love continues forever, and his faithfulness continues to each generation (Ps 100:5).

The LORD is good, a strong refuge when trouble comes. He is close to those who trust in him (Nahum 1:7).

July 18, 2015 - 9:05 am

kathy - All the words have been said, continued prayers we will say.
So cyber hugs I send. God bless dear Bo. And much love to your family. And Steve you are amazing. We love you.

July 18, 2015 - 9:38 am

Rachel - thankyou for your encouragement and honesty which speaks volumes to me.

July 18, 2015 - 12:48 pm

Ellen Robey - Your words breathe God’s promise into me. How constant and unfailing our Lord is. Praying with Hope

July 18, 2015 - 1:27 pm

Wendi Matlock - You are loved…praying for strength and peace

July 18, 2015 - 8:54 pm

Adriel Booker - Bo, I got Psalm 91 for you, especially verses 11-16: “For he will command his angels concerning you to guard you in all your ways. On their hands they will bear you up, lest you strike your foot against a stone. You will tread on the lion and the adder; the young lion and the serpent you will trample underfoot. ‘Because she holds fast to me in love, I will deliver her; I will protect her, because she knows my name. When she calls to me, I will answer her; I will be with her in trouble; I will rescue her and honor her. With long life I will satisfy her and show her my salvation.'”

And also Psalm 139:7-12: “Where shall I go from your spirit? Or where shall I flee from your presence? If I ascend to heaven, you are there! If of I make my bed in Sheol, you are there! If I take the wings of the morning and dwell in the uttermost parts of the sea, even there your hand shall lead me, and your right hand shall hold me. If I say, ‘Surely the darkness shall cover me, and the light about me be night’, even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you.”

Love you and your entire beautiful family. Xoxo

July 18, 2015 - 10:08 pm

Annette Swor - Bo, just heard about Steve’s passing. We’re so sorry, we love your family.
Ron & Annette

July 18, 2015 - 11:53 pm

Jewl - I love that you have found home in the valley of where you are. You are there. And He whispers, “I am here.” And that is enough. How very reassuring that He will always go with each of you, even to the depths of the sea.

July 19, 2015 - 1:33 pm

Lynn - Bo. Sweet Bo. Sweet Steve. That’s all I can say except God bless you.

July 19, 2015 - 7:05 pm

Marybeth LaRivee - I’m so sorry. I’m glad he’s in a better place, but my heart goes out to you.

July 20, 2015 - 11:26 am

Sue McAdam - Dear Bo and Family, Continuing in prayer for all of you. Your lives and testimony have been a blessing to all who you have come in contact through the years.

July 20, 2015 - 1:55 pm

Michelle - Dearest Bo & Steve,thank you so much for letting us share with you-will be remembering you in my prayers.

August 10, 2015 - 6:04 pm

patricia - Bo,
I just found your website and I am so sorry for your loss. My husband is dying of
ALS and yes, it is a horrible, awful way to die.
And no one wants to acknowledge ALS because they are scared it will touch their
lives. I certainly thought that ALS was the worst way to die, only I never dreamt it
found find my family.
My husband is a Vietnam era veteran and veterans are 2 to 3 times more likely to
get the disease. Thank God for the VA.
Steve sounds like an amazing man.
Best to all of your family,
in sorrow,
Patricia

I Get By With A Little Help From My Friends

 

This week.  Wow.  It’s been a doozy.  My days have been full with the usual things, like caring for Steve, and some new things, like my neck seems to have called in sick for work. I woke up one morning unable to turn my head and that issue followed me throughout three days of frustration and discouragement.

 

My low point was Monday and it was L O W.  All day, I fought hard to keep a rising tide of tears behind a flimsy emotional barricade, knowing if I started I wouldn’t be able to start.  I sent a prayer SOS to two of my friends, who immediately texted:  “We want to come see you.” To which I responded, “No, you don’t.  I’m a mess. Trust me. I’ll just cry and I don’t want Steve to hear me cry.”  I felt it was the right response, but I sat down feeling more alone and lonely than I have in a long time…maybe ever. I tried everything on my stupid neck.  Ice. Heat. Icy hot. Tylenol. Advil. TylenolANDAdvil.  Nothing made a dent in the pain and nothing could touch my despair.

 

Just when I thought I would drown in the day, I got a text from Whitney saying she and some friends of  ours had booked a massage for me the next night – and it was someone willing to come to my house, so I wouldn’t have to find alternate care for Steve.  Right after that, my doorbell rang and I found my two friends – the friends I had expressly forbidden from coming over – standing on my porch, holding flowers and dinner and saying, “Don’t be mad!  Don’t be mad!  We won’t make you talk!”  The warning wasn’t necessary, I couldn’t have been less mad at that moment.  They stormed the gates, fed my poor, starving son, rubbed my neck, cleaned my kitchen and listened to my heart. They did it without demands or expectations and they did it even though I told them not to.  They are brave and I ended the night so glad they had come and SO sorry that my friends had to be brave in order to bless me.

 

My neck is feeling better – the PT tells me it’s a “repetitive motion injury”.  It’s my first official caregiving injury, which is remarkable because I don’t know a single ALS wife who hasn’t had them. All other negative physical manifestations from caregiving are – in my case – Twinkie related.  But, truly, things are looking up.

 

What I’ve learned this week is that I still want to do this myself.  I want to manage my pain, handle my grief and care for my husband without needing help.  I mean, I’m thankful the help is there, on the outskirts – but it’s still hard for me to actually NEED it and to welcome it right into the middle of my chaotic kitchen and the murky mess of my life.  I’m trying so hard to change.  To embrace these incredible relationships and to fall into the solace they provide, even when it hurts my pride and invades my silly barricades.

 

If I could offer one piece of advice to those in crisis,  it would be: Welcome the help of friends.  And for those not in crisis: you always have something to bring to the battle and you might be the only one who knows what that is. Keep trying.  For those of us who are in a fight for our peace and sanity, we simply do not know the answer to “How can I help?”  We need a little help with it.  I’m so sorry we make you afraid to give it, but try to give it anyway.

 

With hope and gratitude for friends who don’t quit,

 

Bo

June 24, 2015 - 10:37 am

Melisa Sween - Thanks Bo for the reminder of not accepting help. I am getting better but it has taken me 33 yrs and still I often refuse it. I think for me accepting the help I feel like I am not staying strong or in control and I might totally collapse and I can’t do that. I know I had a hard time accepting compliments too. I had a tendency to say “oh well it wasn’t really me or I had help etc” and my friend and supervisor said when I dismiss peoples compliments I was disregarding them and soon people would stop giving compliments. He said just say Thank you! Over the years it has gotten easier :-). Thanks for sharing your heart! My prayers will continue.

June 24, 2015 - 1:09 pm

Nat Gitnes - I feel ya’, sister! My family is in crisis and God is teaching me, not only to accept help from friends, but also to ask for it….so stinkin’ hard. I told a friend today that I felt like if I started crying my strength would ooze out with the tears. What if it did? Am I afraid that God’s strength couldn’t carry me? Hmmmm?

June 24, 2015 - 6:38 pm

Heather - Bo – you, right along with Steve, continue to be in my prayers daily and sometimes multi-daily. I was driving to the church office this morning at 7, thinking perhaps you guys still had another hour of rest before your West coast sun rose, praying it would be a peaceful day where you would find strength … You have been on my heart more than usual and i will continue to lift you guys up. Thank you for sharing so openly. We love you guys here in Nebraska!

June 24, 2015 - 8:45 pm

Tammy - Sweet Bo, look at the help that is offered as an answer to your prayers, because it will make life easier and less stressful for you and allow to enjoy the time with Steve rather than wrestle your way through it. Think how you want to look back at this time; is it “I was such a brave trooper” or “I remember when Steve and I had this special time together”? Let God’s Angels make your load lighter, lovely lady.

June 24, 2015 - 9:50 pm

Jewl - May my stopping into your site here tonight add just a bit more blessing to the major gift you received of good friends dropping onto your doorstep and a much appreciated massage. “Lord, ease the muscle strains in both your children there.”

June 25, 2015 - 9:32 am

Christine Duncan - Bo, over here in Hamilton, Ontario, Canada lifting you and your family up to the One who hears every cry. Following your journey has been such an inspiration to someone like me… I live with chronic depression {Dysthymic Disorder} (of the lifelong variety) and my disorder likes to try to make me a victim.
And then I read one of your brave posts.
And I shrug the victim mentality off.
And I wait out the misfiring wonky transmitters behaviour in my brain and body… and I cling to Him.
You don’t know me from a hole in the wall but know this.
Every post is another post where God uses you to touch the rest of us. Hang in there. The Life Preserver’s got you.

June 26, 2015 - 10:47 am

Rhonda - Bo, I don’t know you personally, but know people who do! Your posts inspire me every time I read them. I am currently struggling with a severe lupus flare. Your strength in the face of a seemingly impossible situation gives me strength and hope as well…..Thank you for continuing to share and inspire. All of God’s blessings to you and your family !

July 1, 2015 - 8:11 am

Ginny Mayo - I lost you for a while don’t know how. But God brought you to my mind & I found you! (I am Duane Cole’s favorite auntie).
You are one amazing lady.
Shalom
Auntie Ginny

Dear Grandbaby: About Charleston

 

Dear sweet, almost-here Grandbaby,

 

I can’t stop thinking about you this morning. Lots of times when I think about you, I imagine your tiny feet and hands and nose, but today I’m dreaming bigger than that.  I’m dreaming about your big name – Phineas Brave – and thinking how badly our world needs you.

 

We are reeling this week because a young white man went into a black church in Charleston and opened fire.  Nine beautiful lives were ended by his hatred. Countless family members are today planning funerals instead of summer vacations.  It’s tragic beyond words.

 

And yet…words.

 

Words are everywhere.

 

Everyone is talking about why and how and What In The World is Happening Here? and I want to scream: the very same thing that has always happened is happening here! 

 

I was born into the racial violence of the 60’s.  You are being born into the racial violence of the new millennium and the best thing you can do for your world is to refuse to rename it anything other than that. Refuse to get caught in the spin that this is isolated or that gunman was mentally ill or this was an attack against Christians and not an attack against black people.

 

Refuse to let the world tell you this can’t change or that we’ve come as far as we’ll ever come to bridging the racial divide, or that being born into a middle class white family in Bend is the very same thing as being born black in Baltimore. You don’t have a responsibility to defend all people because you’re white.  You have a responsibility because you’re human and because the God we serve demands it.  And, wow Finn, I hate framing any part of your future relationship with God in terms of demands, but there’s no softer way to say it and still stay true to the Biblical mandate  – God demands that we stand with the poor and oppressed.   But Christians have been treating it as optional for way too long.

 

Caring for our brothers and sisters of every skin color is a core value of God Himself and we should be willing to do, pay or say whatever it takes to make sure that every life is given the value and safety it deserves.  In order to do that, we’re going to have to stop looking away and start asking painful questions.  We’re going to need to be willing to leave the cheap seats and move right into the messy middle, where statistics tell the story of what it’s really like to be black in America.  We’re going to need to insist that we can do better than this.  We can fly better flags than those that keep old wounds festering. We can build better schools in at-risk neighborhoods. We can choose to admit that this is not an African-American problem, it’s an American problem and it’s our job to work towards healing and a whole new level of harmony.

 

Oh, darling Finn.  I’m hopeful today because of you. Because you will come with those incredible little fingers and toes, but you will come bearing the Imago Dei – the image of the God of Justice tattooed on your DNA.  You will come brave and ready to love your world into life. You must.  Because I’m increasingly convinced that the divides that have prevented my generation from meaningful forward motion, will keep us stuck in this spinning, re-labeling madness until we die.  The only hope for a future of reconciliation is the now-being-raised army of compassionate, courageous culture-makers with names like Greyson, Clara, Ivy, Hattie, Gracie, Laila, Whalen, Ole, Penny, Bear…and Phineas.

 

Be brave, little ones.  Our future needs you.

 

With hope,

 

Granbo

 

 

June 19, 2015 - 9:17 am

Stacey - Bo, I think you meant to put Charleston, not Charlotte! 🙂

June 19, 2015 - 9:44 am

bo - Stacey – YEP! I am cursing auto-correct as we speak. It’s funny how I proof the body of the post eleventy billion times and never proofed the title. 😉

June 19, 2015 - 12:42 pm

Teresa B - I had not heard about Charleston. Sad sad. Praying for those families of the lives lost. What a beautiful letter to your sweet grand baby. My mom wrote a letter to Jacob and every time I read it I get all misty eyed. Can’t wait to meet the newest little. This is the generation that can and will make a difference! 🙂

Angel Armies Golfing: An Update From Steve

 

I’ve come to dread the question, “How’s Steve?”  It used to be easier to answer – when there were up’s and down’s, good days and bad.  Now, it seems like all the days are difficult and all the nights are long. This stretch of road requires a lot of endurance, and the determination to count the moments as they come without measuring one next to the other. So the question is tough to answer, but I know everyone cares about how he’s doing and wants an update, so for this one I went straight to the horse’s mouth.

 

Steve talked, I typed (word-for-word – I promise!)  He was exhausted at the end of this..but here are his words to you:

 

Hello family and friends,

 

I was listening to Chris Tomlin’s song, “God of Angel Armies” this morning and there was such a presence in the room. It made me well aware that Jesus has some assigned angels that have gone before me in my battle with ALS. I’ve had some tough weeks lately but I’m also aware that I’m not alone. While there are times my family and friends can’t be with me, Someone is always with me.

 

Thank you for all your prayers and your faith. I am in God’s hands and I can’t think of a better place to be. Last January, I remember wondering if I would see this year’s US Open.  It starts tomorrow, so I have a pretty good chance and I’m excited about that (please imagine Steve smile/smirking here.) One thing that is happening to me that I’d love to share with you is that I keep falling in love with Bo Stern over and over again. (Another smile – he’s just trying to fluster the scribe here.)  There are some earthly treasures that carry more weight than others, and Bo does it with honesty and faith and grace.

 

Keep praying and keep faithfully asking God for His will to be done in my life and through my life…as we should pray that for everyone, always. I sure do love you.

 

Your friend and warrior in Christ,
 

Steve

 

P.S. I think Ricky Fowler has a great shot at winning the US Open, if you wanted to know who I’m pulling for.

 

June 17, 2015 - 10:32 pm

Lisa - Thank you for more than you will ever know. You sir, are a blessing and a teacher….

June 17, 2015 - 10:42 pm

Betty Yoder - So good to hear from you Steve. You and Bo and your family come to mind often. You all are in our thoughts and prayers. We will be watching some of the golfing too so we will keep an eye on your pick. Ken and I don’t golf, maybe to late to learn, but we still enjoy watching. Blessings !!

June 17, 2015 - 10:43 pm

Beau Crotwell - I’m pulling for Ricky as well! Love you Steve

June 17, 2015 - 10:52 pm

Alisha Braatz - thanks, Steve. That was a good word. Love to you from us

June 17, 2015 - 10:57 pm

Tammy Anderson - Hi Bo and Steve,
Something struck me as I was reading this and I hope I can convey my thoughts correctly, because it was such a powerful feeling. I think most of us tend to get caught up in the pains and strife of our lives every day and don’t stop to notice God being present in our lives, even without requesting through prayer. So for Steve to notice that presence in the room, regardless of the hurdles he has to overcome in order to be mindful of that moment at that time, makes me realize what a privilege it is to be able to experience all that Jesus is giving him during this journey. Steve’s heavenly reward is beyond comprehension, but he is actually able to taste it in this earthly realm, and bear witness to it for the rest of us to experience also. I feel so grateful to be part of Team Stern; it has been a life changing experience. I love you guys.

June 17, 2015 - 11:23 pm

Karen - Hey Steve, we now have yet another way better use for the letters A.L.S…who knew they meant Angels Love Steve? I know pretty much nothing about golf except that the balls hurt if you try to catch ’em with your hands…so I’ll be on your team and cheer for Ricky Fowler too!

June 18, 2015 - 5:48 am

Karla - Love you so, Steve. Great to hear from you. Enjoy the Open. I’ll be pulling for your guy to win! 😉 As always, hugs and prayers and God’s will to you and your love… Smooches, Karla & Charlie

June 18, 2015 - 6:45 am

Leslie Forbes-Mariani - I am humbled and blessed. The grace of God is evident in your lives more and more each day. You motivate, encourage, and inspire me, thank you for allowing me to be apart of your journey. You are loved, my family and I remember you in prayer each night. Les

June 18, 2015 - 7:24 am

Helen - Yes to angels of armies.
Yes to capturing the depths of love.
Yes to sharing the sacred to the multitudes. Thank you.
Oh and Yes to Ricky Fowler…loved watching his last victory
in that crazy playoff.
Yes to continuing to pray for Thy Will Be Done on earth
as it is in heaven.
All my love.

June 18, 2015 - 7:50 am

Holly - Thank you, thank you for sharing with us, loving on us and helping us to some what understand the struggles of going through one of the hardest battles our earthly beings can experience here on earth. 5000 miles apart we are still united in hearts and spirit and we love you and cherish your love back to us through the beautiful transparency you are gifting to others.

June 18, 2015 - 9:09 am

Steve Parnell - Thanks Steve & Bo for your encouragement to us. My friends, I haven’t said much, we havent talked much, but we share so much, our Lord, our church, our kids, our families and our Grandsons! God Bless you today my friend & fellow Grandpa! I Love you too! Steve P.

June 18, 2015 - 1:25 pm

S Harper - Thank you Bo and Steve for helping to prepare us as we begin our journey down this difficult road. Know that your honestly helps others who are struggling to find answers on how to deal with this horrible disease. The love you have for God and each other shines through the darkness. My prayers are with you and your family.

June 18, 2015 - 3:11 pm

Joe - Thank you for the update. I love how you have been authentic and consistent from the time I met you before ALS up to this year’s US Open. You’ll always be a true hero to me. Love you too.

June 19, 2015 - 11:53 am

Neila Swor - Thank you Steve & Bo for your update. I woke in the night with you both on my mind. They were such happy thoughts, remembering you in my prayers makes me happy. To hear of your special angels keeping their vigilance with you gives such pleasure in our Lord! We’re with you and will take up a new interest in golf!

June 19, 2015 - 8:13 pm

Rachel Bacon - So glad to hear an update on dear Steve! Love and hugs to him and the whole Stern family!

June 20, 2015 - 12:02 pm

Mike Briski - My Friday AM Men’s group is still praying for you Steve, plus three other people we know who have ALS. You are the one we worry about the least, because you are the one we know trusts in Jesus. But we pray for you all.

June 20, 2015 - 6:15 pm

Kathy - I’m new to your story. I heard Bo on Focus on the Family the other day over 106.9, The Light out of Black Mountain, NC. It touched my heart and I’m praying for you. I ordered the book, “Beautiful Bafflefields” and have almost finished reading it. It’s so encouraging. I love the way Bo expresses herself. So refreshing amidst all the pain. Thank you for sharing your story and your lives with me.

Kathy Taylor

June 21, 2015 - 8:51 pm

Phil Camden - Thank you Steve, love you too mate! The Aussies did ok in the golf but just not good enough this time.

Two Words

 

My husband is miserable tonight and exhausted by the myriad of ways his body is betraying him. Turns out, a lot of things go wrong when muscles die.

 

I camp out in a chair near his wheelchair while he watches old movies.  He doesn’t watch them because he loves them so much, but because he needs a way to get out of his own head. There’s not much I can do to help, but I want to be close. I don’t like movies much, but I really like him, so I read and research and pin stuff on Pinterest that I’ll probably never look at again. That’s how I stay out of my head.

 

But back to my point.  As I mentioned, Steve is so tired and so, so uncomfortable tonight.  My parents came over and we tried to pray for him, but I could only cry. I couldn’t say any words.  I’m so tired of watching him suffer with no way to help him. Not that prayer doesn’t help….it does.  I believe in prayer, but have you ever landed in a place so confounding and painful that you can only pray out tears and groans and sighs? That’s me tonight. I’m so thankful for parents who are just as lost for answers, but are able to find the words we need.  My dad started his prayer for his dear son (the “in-law” part is just semantics) with these words, “Father, we have no might in this battle…”  And that’s all I remember, but it’s exactly how I’ll probably start every prayer for the rest of my life.  My parents prayed, Steve and I cried, and then I walked them out to their car.  When I came back in, Steve caught my eye and mouthed the words, “Hello, beautiful.”  They were silent and ragged, but they were dearer to me than any of the million times he’s said them in the past thirty years.  They were an offering. A diamond ring. A party dress.  A sweet caress.  Just two words, poured out like water on dry ground, from dry ground.

 

This night was hard, but I’ll tell you what: I will never forget it.  Not as long as I live.

 

With hope,

Bo

June 3, 2015 - 10:21 pm

Michelle Watson - Oh Bo…I am crying with you right now. My heart aches with you and all I can do is feel helpless with you from afar. I love your dads words and I love Steve’s words. The men in your family are warriors right now. They’re holding the truth and they’re standing in the fight, one while he stands and one while he lays. But both are warriors and heroes in my book. Love to you anew right now, my friend.

June 3, 2015 - 10:22 pm

Stacey - Oh, Bo. I am praying for you and Steve. Really, truly praying. Crying all the tears. You are both my real life, true, one hundred percent heroes. Not a day goes by where I don’t think of the two of you and the love you share.

June 3, 2015 - 10:39 pm

Mitzy - Precious…. My forever memory is Ron using every bit of strength that he had to lift my hand to his lips and kiss it. You are so correct, you will never, ever forget it. Love you, Bo….Come Lord Jesus…..

June 3, 2015 - 10:42 pm

Helen Campbell - I am so very sorry for this difficult time. Your diligence in sharing impacts my heart to be more thankful. Your commitment to honoring and respectimg your husband in these trying days encourages me to be more loving to mine. Your constant praise of our Lord inspires to be more faithful. May you and Steve sleep well. May your joy cometh in the morning.

June 3, 2015 - 10:45 pm

Phil Camden - love and tears for you both. …………….

June 3, 2015 - 11:06 pm

Sherry - Bo, your words are medicine to all of our souls. It is a minor offering to share any hope I might have for you but if I could I would whisper none of this is a surprise to God. His arms are wrapped so tightly around Steve and you right now and there are no words needed to be said. HE is with you, tight and strong, His everlasting arms are holding you all.

June 3, 2015 - 11:17 pm

Arlene Hiatt - It’s 1am in Lincoln . . . I’m awake and just read your blog . . . my heart hurts for you and Steve . . . praying. Love you both.

June 4, 2015 - 1:52 am

William Hummer - Thanks for your parents who can stand in the gap. They are God’s gift. Prayer is Important but God really cares about the heart attitude. If words don’t come then He sees the tears.
I am sending our love now. May God’s peace come in the storm and in your weariness.

Bill Hummer

June 4, 2015 - 2:16 am

Stacey Novak - Bo and Steve,
My heart is breaking for you both. You are an inspiration to me. First as a PALS, I will always keep fighting to stay with those I love. And second, I will continue to believe in the love, prayers, and unending strength that each of my family and friends prays over me, my hubby (the love and strength of my life), and my children.
May God give you rest, sleep, and joy in the morning.

Love,
Stacey

June 4, 2015 - 5:05 am

rebecca carrell - Praying for you through my tears. Thank you for allowing us to take this journey with you.

June 4, 2015 - 6:34 am

Ellen McBride - Dearest Bo,

As much as my heart aches when I read your blog, I am so thankful that you are able to use your words, so we can shoulder with Team Stern. This post reminded me of a time when my step dad (whom I was extremely close to) was battling cancer. Yet, I know that time can’t even compare to what your heart is feeling at this moment.

I never grow tired of reading this blog, as it is a sweet reminder of how important the words that we utter effect those whom we love, so dear to our hearts.

You and Steve,(and the children) are consistently on our hearts, minds, and prayers.

Praying for rest and a sweet presents our the Holy Spirit tonight.

Ellen

June 4, 2015 - 6:41 am

Julie - I refuse to forget the nights I sat and held my daughter and walked this very road. It is nothing short of heart breaking. It is ok for you both to feel frustrated, exhausted, angry and sad. God knows all about those feelings. He loves you both, and his heart breaks for your suffering. God promises that he won’t ever leave us, so while the storm is raging keep looking for the lighthouse. It is there, even if you don’t see it.
Sending Prayers for all of you.

June 4, 2015 - 6:51 am

Steven Phillips - Bo and Steve,

I cried as I read your post this morning. A couple days ago, a guy I know said, Illinois, in the conversation, and he pronounced the “s” at the end of Illinois. I was reminded of Steve being flabbergasted that people in the USA couldn’t correctly pronounce Illinois. That reminded me of different time, what seem like an eternity ago, when Steve was at a different place. As the guy said Illinois, my mind was flooded with so many memories. Thankfully, I didn’t lose it at that point, but after I walked away, and was sitting in my truck, I cried as the memories flooded my mind and my heart, again. Then I was reminded that through the journey Steve has become a fuller man and a more complete man of God.

This morning I was also reminded of some verses from the Psalms that have been on my mirror for many years now. They have been there through some very deep waters and through some very windy storms. Perhaps they will help today: Ps 18:19, 31:8 and 118:5.

We love you guys and we are standing with you

June 4, 2015 - 8:25 am

Nathele Nat Gitnes - My heart hurts for you and Steve

June 4, 2015 - 9:31 am

Edie - Bo, everything that comes to mind to write in response to your post seems so shallow and trite compared to the depths of emotions that you have stirred in me. I learn so much with every one of your posts. To trust, obey, cherish, remember. God is good. I am so thankful that you decided to share your journey with all of us, instead of hiding away in this time of suffering. We are praying for Team Stern daily. Love you all.

June 4, 2015 - 11:46 am

Pam - You have my heart, dearest sweetest friend.

June 4, 2015 - 12:00 pm

Marianne Sansour - I have ALS and i know what you and your family are going through. I see the pain in my family eyes and faces and it hurts to see them go through this.I’m going into 5 years of this living hell.I’m having to depend more and more on others for mobility and i hate it. What keeps going is PRAYER.I’m sending prayers and love to you and your family. GOD BLESS YOU.

June 4, 2015 - 2:52 pm

Susie Kay - Precious Bo,
Your journey stirs gratitude within me.
Gratitude for your willingness to share your love and faith as well as your heartbreak.
Gratitude that as you share, I have found healing in my own heart, faith in our Lord that He is always near and always cares, and trust in knowing my position in The Kingdom.
Loving you both and thanking you with gratitude, Susie

June 4, 2015 - 3:15 pm

Donna Armstrong - I sincerely know what you are going through as I am also going through this. My husband is in his 5th year. I so sympathize with you. I cried too as I read your post.
Thinking of you

June 4, 2015 - 5:40 pm

Mike spencer - i clearly understand and identify with your feelings. I went through two years of watching my loving wife fight the ALS battle. She became a brain in a chair and suffered soooo much. Her pain is no more! I miss her!

June 4, 2015 - 6:54 pm

Lynn - I’m praying SO hard for you. And Steve. And the kids. And all the survivors on earth and in Heaven. Lord come quickly for us all!

June 4, 2015 - 7:58 pm

Sharon Murray-Roberts - My words are so small Bo but just wanted to say that prayers are going up in Mississippi. Much love–

June 4, 2015 - 8:33 pm

Barbara - For some reason these words, “Father, we have no might in this battle…” are what struck me first. The wisdom to acknowledge this, the humility to pray this – and the truth of it. My family is in its own battle – not with ALS – but with mental illness.. and these words have helped me remember that it’s okay if we are not mighty in our battles – we don’t need to be. We just need to be yielded to Him. Beyond that, as others have said here, thank you for being willing to share this journey. It has profoundly impacted me and those I share it with. The depth of your faith, the love you have for each other, and transparent way in which you share it all. Blessings to you both.

June 4, 2015 - 10:10 pm

Jewl - … tears for you all, Bo. If we can grieve the Holy Spirit then He feels emotion, and feels deeply, and since He prays for us with groans that words can’t express, then every sigh you breathe through tears is you joining a Holy God as He prays for both you and Steve, and He joining with you. That’s beautiful! And this is painful beyond what I know to imagine.
I love how God prompts me to check your blog for a new post almost every time you write, even tonight, when one wouldn’t expect a post so soon after the last. And it’s the last thing I do before bed. It’s my prayer for you. A sort of communion with you in your night time suffering.

June 5, 2015 - 3:07 am

Michael Wenham - Dear Bo

I’m weeping. Thank you for being so real. We love you both.

Michael and Jane

June 5, 2015 - 11:00 pm

Cathy Wood - Thank you Bo for letting us hear the “best” from one of the worst of times!!! It is honestly a privilege to know you!!

June 6, 2015 - 8:44 am

Lisa - Bo, we will all “stand in the gap” praying because we know what it feels like to not be able to find the words because we are beyond sad. We pray for His will.
Blessing for you all.

June 6, 2015 - 11:52 am

Betty Yoder - Thinking of you and praying for you often. Love you all !

June 7, 2015 - 10:40 pm

Bonee - Bo
Our Bible Study group has been going through your book Beautiful Battlefields and receiving blessing after blessing. Your writing is so genuine, so descriptive, so enlightening. Please know that we are lifting you in prayer as you face your battlefields. Your ministry has touched our lives in a lasting way; I for one will never look on hardship in the same way. Right now I pray that you will feel one of those “Daddy Moments” where God’s love wraps you in a security hug and His love draws your eyes heavenward so you can see the minuteness of this life on earth.
Blessings to you
Bonee

June 8, 2015 - 8:52 pm

Vangi - Oh, dear Bo. I am sad beyond sad for Steve’s suffering — for your suffering — for the drained, empty, so, so done with it all load. And yet, neither of you have suffered and then refused to get back up again. You did it yet again in your post — the beauty was there, the strength, the blessing others in the midst of suffering…you got back up and you shared with us both sides of the dark side of the moon.

I love you so much. I’m praying for you. And I’m taking something with me from this: “we have no might in this battle.” Only He does. And He does. And I declare His might over you tonight — in your weakness, in your tears, in your sorrow, in your done-ness. Jesus, fill this beautiful, faithful family with your might.

June 9, 2015 - 8:33 am

Jennifer Kem - Hello Beautiful Bo, Those same two words keep my heart in the right place.
♡ Hello Beautiful ♡
I say ‘hello handsome’ back to Brandon. It’s been our love note to each other for years. I’m excited that is another parallel in our different journeys.
Reading your two words from Steve, your parents full adoption of him within their hearts and Steve’s deepness for you by two words lifts my heart higher inside. You are both beautiful.
While our circumstances are not beautiful according to the world … the world doesn’t often get spirit. I love you my friend.

June 12, 2015 - 11:49 pm

Cathy Bennett - I am so grateful for the strength and biblical wisdom you have shared through Beautiful Battlefields and your website. My husband was diagnosed with ALS a year ago so I am on the same difficult journey. I can’t tell you how much you transparency, heart and dependence on God has given me strength for my battle. It was also so helpful to reframe our journey as a battlefield where we could make spiritual choices vs. just be victims of our circumstances. I am praying for you, Steve and your family.
Cathy in Mpls.