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Back when Steve and I were both healthy, I occasionally thought about what it might be like if one of us got sick (**see footnote below). I imagined many of the challenges that might go along with a terminal diagnosis and I was right about some of it  – but I missed a big one completely.

 

One of the most difficult things about navigating a marriage around ALS (for me, at least – I certainly don’t speak for everyone) is that for the first time ever in our relationship, we are heading different places.

 

Our 29 years together have been filled with up’s, down’s and a whole lot of middle’s.  We have not done marriage perfectly by a long shot, but the one thing we’ve always contended for in our relationship is unity of purpose.  We have really tried to have the same goals in mind:  raise happy, healthy kids, upgrade the car, improve our education, serve with excellence, etc.  We are a good team because, while we disagree on plenty of shallow things (he likes oysters.  Ew. How can I agree with that?), we always agree on the big things and we help each other believe that we can get where we’re going.  We’ve had to adjust our course through the years, but we’ve always adjusted together.

 

But when Steve was given a 2-5 year prognosis, it was like we both heard the word “recalculating” spoken independently to each one of us. From my vantage point, Steve’s journey is far more difficult than mine, but his destination is much more beautiful. He’s moving toward resolution.  Toward the ultimate cure. Toward a life that is unknown and yet not – we know it will be beyond all dreams or imaginations.  He has no decisions to make about his future life which I know is both unsettling and comforting.  My destination is also a mystery, but I feel so responsible for it and for the children who trust me to lead them.  I feel like I’m entering a world with no map and without my trusty sidekick who’s helped me with directions for 30 years. He’s also made the journey really fun. So I can’t say that where I’m headed looks in any way dreamy.

 

And yet, I have this assurance that circles through my brain when I start to feel suffocated by thoughts of an unknown reality and you already know what it is because I say it here all the time.  The God I’ve chosen to follow has already been to every minute of my life.  He knows where our respective roads are going and I do believe He calls them both, “good”.  He has good plans for me and beautiful plans for Steve. He’s always known where the road will take us, and He’s not wringing His hands in heaven over the fact that the details look murky to me.

 

So, we walk, Steve and I.  We walk together.  I help him get where he’s going and he helps me.  He talks with me about what to do with the house and the kids.  He has father-son talks with Corey about how to help me navigate the road ahead. He generously sows into a future he may only see from the balconies of heaven.  And these conversations?  They are painful. Yipes, they are painful.  They are filled with rolling tears and gaspy sobs (me – all me, Steve doesn’t cry about this stuff).  They are filled with brutal, raw-edged beauty that I will remember always as the most intimate moments I have ever shared with the love of my life.

 

I don’t have a clever application point to end this with.  I can’t tie it all together for people who are not steering their way through the Shadowy Valley.  I only share it to point to the goodness of God in a world of uncertainty.  Also, as a marker I can return to when I wonder where the heck I’m going and where is that map and how do I read this compass anyway?  I hope it gives you hope that you can find your way as well.  A verse to end with seems like a good idea:

 

That is why I am suffering as I am. Yet this is no cause for shame, because I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day. 2 Timothy 1:12

 

 

With hope,

 

Bo

 

 

 

 

**Note to healthy people:  try not to do that.  Just enjoy being healthy.  And if you DO imagine tragedy, just remember: you can imagine the pain, but you can’t imagine the grace that comes with it.  That’s all.

 

 

28 Comments

  1. Bo, you always manage to bring a smile to my face, put a tear in my eye, affirm the hope in my heart and re-focus my eyes on Jesus. You are the real deal girl! Sending you a hug and always praying.

  2. Beautifully written Bo. As a woman who is struggling with her own painful road, I’ve been reminded of the hope in my future because of my God whom I love and follow. So thank you. You and Steve are always in my prayers.

  3. Love your sweet, humble words of truth. God is so good.

  4. With tears of joy and hope…Thank you, Bo.

  5. God knows our roads and ours have been different.
    But II Timothy 1:12 has been a security blanket, a life raft
    and ever present comfort and reality during a hard season.

    I am so blessed to know and love God and to know that there is no bottom to Him and that His resources continue to supply you all moment by moments no matter what is contained in that moment.
    Thank you for being so generous to liberally share the evidence His grace and provision in your lives.

    I also glad it is not redundant to say that we continue to pray for God to do His work as only He can.
    xoxo

  6. Beautiful.

  7. Helen – “there is no bottom to Him”. Yes. I’m going to put that line in my pocket today.

  8. Thanks so much for this post Bo. you are truly a warrior. As I read it this morning,, I noticed that many of the things you said applied to me. At 82 years old, I find my self thinking the same things. So you have been a real faith builder for me. I know it’s not the same, but I want you to know that you have been a real blessing to me through out your difficult journey. And I am so proud to be your Uncle. We are praying for you.

    Uncle Robert.

  9. Bo, I hear your heart because mine is right there too. Richard and I have hard discussions about the future when I must travel on alone (if this is God’s plan). He says the hardest thing for him about ALS is having to leave me. I know we need to have the discussions because he wants to prepare me and there’s so much I don’t know, but I can hardly breathe for the tears and the pain. Sending you a hug today. Thanks for putting into words what I’m feeling.

  10. XOXO- B

  11. Bo thank-you it is a blessing even knowing you people GOD LOVES US SO MUCH MIKE

  12. Hugs. Hugs. Hugs.

  13. My father passed away 3 years ago after quite a few more of being progressively sicker. To watch my mother soldier on after 37 years of marriage with a relatively long life ahead of her, navigating it alone now, but also never alone, is sheer grace. I’d say she knows a thing or two about God’s mercy and also joy but she’s known suffering and I know it sounds trite to say she’s better for it, but I’ve never seen anything so beautiful as her walk leaning hard into God these past few years. It’s all of that wrapped up and walked through. Thank you for sharing your story.

  14. Hi Bo, I’m pretty sure you don’t remember me… I was sent your web page somehow a few months ago. I have been so encouraged as I read your posts. I met you 21 years ago in Lincoln Nebraska. I remember being in church and hearing you and your daughter sing while playing “This Warrior is a Child”. To this day when life seems difficult and the valley seems deep… I remember that song and what a comfort it is… you truly are a warrior. Debbie

  15. Oh, Bo. How I love you…and the beautiful, gripping truth that you wrap up in such beautiful words and phrases. Astounded and blessed by both. I weep as I read this for your family…but not without hope or life or an acknowledgement once again of the goodness of God.

  16. Bo- Thank you for always sharing your truth, faith, raw honesty. As I am going through my own very dark time. I thank you for allowing God to shine through you. Bless you both.

  17. We are praying for you Sterns. Bo, you blow me away. So wrecked just reading this. God is real, this is real, this is happening and He’s right in the midst of all of it. His presence is dripping off your life and your words. You carry a heavy, but powerful mantle, but you do not carry it alone. I see God draping it over your shoulders, like a heavy blanket, but it’s huge. It is more than you could ever lift or stand under, and you look up at him and say “I can’t”. I see compassion in His eyes, and He looks around your life and nods and those who are standing nearby. One by one, they understand, and come and slide under it with you, allowing the weight of it to rest on their shoulders as well. More and more silently come, no words needed, and before long what was heavy is light, what was a burden is a covering, and what was impossible is possible. (Gal. 6:2, Matthew 11:30). Thank you for taking the time and energy to let us into this walk with you. You have allowed God to change lives through you.

    • Ryan Rhoden – Wow. Thank you so much. The word you’ve shared could not be more meaningful or powerful in my life today. I’m going to hold onto it with both hands.

  18. THANKYOU!

  19. What a beautiful verse. And I know that God is in this and He is GOOD!

  20. Hi Bo, thank you for sharing your heart. I’m praying for you.

  21. Amazing and beautiful. My prayers are with your family.

  22. Nancy Gayman Shaw

    Wow! So true. When someone asks me how my day is going I say, “It’s always a good day when I can get out of bed.” Today I got out of bed, only to be confronted by spiritual warfare concerning my wayward granddaughter, Anika. My heart is breaking to see what she is choosing to do with her life when I have friends in Christ who are walking thru the valley. At 17 she feels immortal and that life is meant to do what ever she chooses and party, party and getting into trouble is no big deal. Her password on her IPod is 666, which we have asked to be removed and she thinks it’s a big joke to mimic satanic gestures when she post photos of herself on instragram and facebook. She knows Jesus is the way the truth and the life but tells us she is not ready to make that a commitment and of course, her actions show it. I grieve for her soul and life as only God knows how much time she has to live for Him. I refuse to listen to her lies because I know where they come from. It’s almost like watching a disease steal a person’s dignity if they let it. My only hope and nothing less is Jesus Christ and His righteousness. I would like to go to bed and pull the covers ovwer my head and when I wake up have everything normal, whatever that is. Know God doesn’t promise us normal, whatever that is. Everyday is a new day, a new walk, new experience with Him. Some days are diamonds and some days are stone, some days the cold wind won’t leave us alone, as John Denver sand once upon a time. But God is still there no matter what kind of a day it is. This too shall pass. Thank you Jesus for Steve and Bo and all the words of encouragement because if they can rise above what has come upon them then we all can too. LOL

  23. Thankyou Bo, just simply Thankyou. God Bless you and your family deeply! Love you with all of my heart, because that is the gift you share every time you write. Thankyou!

  24. Thank you.

  25. Bo I don’t have adequate words to express the impact of your words. The responses of so many people clearly show that god has gifted you with a unique ability to share at a raw vulnerable amazeingly honest place. My heart breaks for you Steve and your family. I too am blown away with the power of your faith and the integrity with which you all are living out as you are in this particular time and place. I was in your first beautiful battlefields bible study. I still talk about its impact. I bought many of the materials and have given them to people who needed it. You have challenge me to examine my life on many levels and I thank you for this. I truely hope that as one of your blog writers wrote that you feel supported by those who come under your blanket of burden with the attempt of makeing it a bit easier to bear. You and Steve are truly special and powerfully being used by god!

  26. Oh Bo,
    Thankyou so much for last night and your amazing words, you are so truly anointed by God, and do such an awesome job speaking His Truth!! I was so excited when I saw we’re going to be our speaker and teacherlast night..we haven’t made it much this summer 2 our regular Saturday night services but..last night was very special because it was with my son who is going into highschool and my nephew who is here from out of town and is going to be a sophomore this year and since I didn’t realize there were no high school programs on Saturday night they sat with me…..which quite honestly blessed my socks off…. your message hit home with all three of us but to see the two young men that they are becoming and to truly hear you was a miracle and to hear what you were saying and “get it”. God is so faithful and so good!!! Thankyou……there’s so much more to say but I just more than anything wanted to thank you for sharing for sharing your heart break your heart
    aches, suffering ,the struggles and the good stuff I know you don’t know me but I love you dearly and your family and pray for you everyday, thank you!

  27. My dad lost his life to ALS 32 years ago.He was 39 I was 19. Now so many years have passed it almost seems some days like it was a dream, but then I remember the pain my parents suffered both of them. I will pray for you and your husband and the rest of your family.May God bless you…