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

32 Comments

  1. 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.

  2. 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.

  3. 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…..

  4. 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.

  5. love and tears for you both. …………….

  6. 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.

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

  8. 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

  9. 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

  10. rebecca carrell

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

  11. 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

  12. 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.

  13. 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

  14. Nathele Nat Gitnes

    My heart hurts for you and Steve

  15. 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.

  16. You have my heart, dearest sweetest friend.

  17. 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.

  18. 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

  19. 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

  20. 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!

  21. 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!

  22. Sharon Murray-Roberts

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

  23. 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.

  24. … 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.

  25. Michael Wenham

    Dear Bo

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

    Michael and Jane

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

  27. 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.

  28. Thinking of you and praying for you often. Love you all !

  29. 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

  30. 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.

  31. 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.

  32. 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.