Last week was rough and it culminated in one very difficult night as I was preparing to leave town for 24 hours and dealing with everything necessary to do that while also making sure Steve has round-the-clock care. I wrote this on Friday night and I’m only sharing it today because we are -thankfully – on the other side of it and feeling so much better and stronger now.  I think it’s important to tell the dark parts of the story, too.

 

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I’m sitting here in bed tonight, listening to Steve struggle for breath, and struggle harder still for hope and it is almost more than I can take. We have each felt beaten today. This morning I complained to him about how I need a break, a bit of time away, a good night’s sleep. I regretted my words almost immediately and then I went for a run and replayed them in my head for 3.74 miles.  Tonight I feel suffocated by my own inability to get this right. He feels suffocated by his own body and a sickness that is cruel beyond telling.  We are a sorry pair.

 

I’ve written a lot about ALS, pointing to the beauty buried in the soil of this battlefield, but tonight it’s hard to see it. It’s hard even to see my hand in front of my face – everything is inky black and there is no sign of sunrise. I keep thinking of the thief on the cross, suffering the cruelest death, discovering the promise of a home in paradise, and then hanging there in the dark for three hours. I can almost see him – suspended between the end and the beginning; fighting for every breath and wondering if the promise was true. Would this death end in life?  I feel like we’re living our three hours of darkness.  So the truth I cling to is this:  Even though the thief couldn’t see Him, Jesus was very near; just one cross away.  He is surely in our dark too.  He is intimately connected to our suffering and infinitely aware of all the ways we are gasping for hope and strength to keep fighting this battle.

 

On the beaten days, faith is all I’ve got. I’m not a single bit tempted to toss it out and go it alone. The amount of muscle and ingenuity I have to bring to this battle on my own is laughable.  He is my only hope.

 

Since I started writing this, the medicine I put through Steve’s tube an hour ago has begun to work and his breathing sounds better. He is drifting to sleep and I am praying for rest to sink deep into his bones and into his heart and into his hope. And I’m trusting the only One who can see in the dark.

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As I said, we are better now and we are thankful.  If you would like to shoot a prayer up for us, we are looking for some help with Steve’s care at night and it’s not an easy spot to fill. We’d love prayer for supernatural fitting together of the pieces we need to walk this road with grace and joy.

 

With hope,

 

Bo

 

20 Comments

  1. Prayers to Steve and you–I know they will be answered..and HELP is on the way!!!–Peace and comfort to both of you and your children.Connie

  2. My prayer went something like this for you and Steve:
    (Burst into tears) Jesus….Jesus…Jesus…
    (Burst into tears) Jesus…Jesus…(a few somewhat intelligent requests)…Jesus
    (Burst into tears) Jesus…Jesus…Jesus

    Not my most eloquent of prayers, but I know he weeps with you, and that’s a good enough example to follow.

    Thankful for medicine. (hate this disease). Thankful for the “Someone” that is listening in the three hours of darkness, and is, truly, “a very present help in time of trouble.”

    Love you, sister!

  3. Praying for peace, strength, hope, and joy in the midst of your battle. Thank you, Thank you, Thank you, for your transparency.

  4. Dear Bo,
    As I care for my brother who is in the late stages of ALS your words have brought me such strength and clarity of Faith. I pray for you and Steve and thank you for this post which reminds me I am not alone in those moments of human frailty when my anguished heart seems to be coming apart. Light does return and I know my redeemer has carried me through once again. Blessings

  5. With tears rolling down my cheeks, the prayers are being sent up for strength and peace during this time. And a compassionate and competent person to care for Steve at night.

  6. Jesus be their strength right now. Be their peace and rest. Clasp them tight to your bosom Jesus.

  7. (I am Rob’s mom and Laurie’s
    mother-in-law)

    Late last week I was abruptly
    awakened by not a thought or
    picture reminding me to pray,
    but two large printed words:
    STEVE STERN.

    Steve, Bo, your family and your
    battlefield were/are completely
    covered in prayer. Father, Son
    and Holy Spirit are present,
    holding you, comforting you,
    giving you wisdom and being
    glorified in your struggle.

    Steve and Bo: you are an
    inspration to our family.

  8. Dear Bo,

    I can’t thank you and Steve (and your kids)enough for fighting the good fight and sharing about it so openly. What a good metaphor to use the theif on the cross. Since you share, other precious ones will have courage to face their hours of darkness. Praying for the Light of the World to shine on you and for you to reap a thousand fold for all the good seeds you sow. Also joining you in prayer for the perfect help to fit right into your family and bless you all with tender, skilled, and compassionate care.

  9. Although I am sharply knowing some of what you are going through, I feel helpless. But I am also absolutely convinced he is there with us in the dark. I am praying his light continues to reach you where you are. Please know my heart is hurting for you.

  10. Hugs and more hugs and steady prayers.

  11. Pingback:Read This AND Pray | Sharing My Heart

  12. Bo…I have known you have been struggling, I guess I should say I knew Steve and you both were struggling, as I have been awakened both Sat night, (early Sun morning actually…2-4:30am, and last night, from about 1am until 3:50am or so…both times you and Steve, were on my heart & in my prayers, and I felt like I was told to breathe for Steve early this morning…so I did…so glad things are better (some) today. I love you both so much! Only eternity will reveal all that our wonderful Father is accomplishing in these 3 darkest of hours! Love you so! cindi

  13. Dear Lord, Though Bo and her family feel a weakness at times in the hours of darkness may she rest assured in the strength that you have for her in each new day and the strength that she gives to others who share in this battle. Please provide the perfect in home health person to share with the nightly care for Steve.

  14. Hi Bo and Steve.

    With tears, love, prayers and much love from Australia.

    • Phil Camden – a million tears, prayers and SO much love back to you, sir! In this together, you know. -Bo

  15. My heart is so full, all the pain people I care so deeply for are going through. I have found myself on my knees, pleading with Jesus for some understanding as to why there is so much suffering. I have felt so powerless….I can’t help…..the Lord showed me this morning that I can through prayer! So know that you are in my heart, thoughts and abundant prayers..love and hugs Laura R.

  16. I don’t even attempt to understand your trial, but I know our God is great. I know that He will never leave you. I know that He is LOVE. May you have unbelievable strength and power. May you digest His sweetness and rest in His goodness. May God grant you the desires of your heart. May Steve be mightily healed in the name of Jesus.

    Sincerely in Him,

    Helen Campbell

  17. I can’t help but think of how my Mom felt when we were taking care of my father. Every time we caught ourselves feeling tired and drained from the hard work of it all we would immediately feel guilt. Guilt that what my father was dealing with was far more frustrating and guilt that he often felt like such a burden to us. I remember telling myself, ‘God only gives you things he knows you can handle.’ And I have to say, God must think pretty highly of our personal strength.

  18. Thank you for sharing Bo. I too face the same struggle as you and it is comforting to know I have a sister in Christ walking the same road who truly gets it.

  19. Patricia Frisco, BSN, RN, CDE

    Enlightenment much appreciated. I am so sorry for your struggles…prayers sent…