I’ve wandered to my keyboard today, wanting to write out some sort of something. Emotions, memories-in-the-making, fears, failures, frustrations, wins, wounds. Maybe I feel a little behind in my processing or maybe there is no such thing. Maybe we’re on a new stretch of road in the journey and my head is spinning with all the ways I feel inadequate to shepherd my little flock through this unmarked place. I don’t know, exactly, all the things happening in my head, but I do know I am loaded up with thoughts and just a little nervous about what might flow out of my fingertips.
And yet, I’ve committed to authenticity – as much as I can muster and as much as I feel the world outside our window can handle. So, here I am, landing hard on the grace of Jesus today and using my words to share some random thoughts that really may be only for me. Feel free to jump off the train right here if you’d like.
- Steve has been dealing with a strange ALS phenomenon that I won’t describe here because it’s complicated and involves the word “mucous” which is never going to draw readers to a blog. Suffice to say, he feels like he’s drowning a lot of the time, especially at night. We use meds to try to combat it right now, but meds-through-a-feeding-tube-at-night involves so much more time and energy than one would imagine. We’ll be getting a cough assist machine this week and I hope that’s a better solution. All that to say: we’re pretty tired. This is a weary, sometimes scary, season.
- I’ve been trail running for several months now and I love it. I’ve realized recently that one of the reasons I love it is because it’s a microcosm of life. A trail has pretty and ugly and sunny and shady and downhill and uphill. It has parts that are exhilarating and parts that are exhausting and parts where you think you can’t go on, but you have to because you’re not going to spend the night on a trail, three miles from home. That feels like life right now.
- Our grandson, Greyson, has what I believe might be a supernaturally-fueled love for his grandpa (Papa). It. Is. Beautiful. And sort of heartbreaking. It’s like a lot of things right now (and a lot of things today, because I’m tired and tears just roll so easily.)
- Sometimes, when I talk about the beauty we’re finding in our battle, I feel like people suspect I’m in some sort of denial. Please understand: finding the upside in this thing is not some clever marketing ploy for my book or a “good Christian girl” response. It is, simply, my only survival. It is my anchor in a tsunami. Remember Tom Hanks’ attachment to Wilson, the volleyball, in the movie “Castaway”? That volleyball was his only hope, his only friend, his only reason to keep moving. It’s not a great analogy, but that’s how I feel about our hold on the reality of eternal life right now. Those who feel it’s a shabby consolation prize are certainly welcome to their opinion, but we won’t have much to talk about. Because, again: it is our only lasting hope. It’s all we have and it is enough. Some day I might have the energy to defend that position to the naysayers, but for today, I’m just holding to my anchor.
- Even as I sit here writing these swirling thoughts, friends showed up my door with a care package which includes orange flowers. Orange flowers are my love language. Jesus knows. And cares. And sends people to remind me
In conclusion, this song, these words on repeat in my life:
Far be it from me to not believe
Even when my eyes can’t see
And this mountain that’s in front of me
Will be thrown into the midst of the sea
So let go my soul and trust in Him
The waves and wind still know His name
It is well with my soul
It is well with my soul
It is well with my soul
If you’re facing a mountain (and most of us are, right?) you can find the whole glorious song right here.
I love you,
Bo
Thank you Bo, for sharing a glimpse into your tired and weary soul;and whether you know it or not, you are being carried above the waves by the life-ring of love and prayers supplied by those whose lives you have touched in your candidness of sharing. Steve and you are in my prayers through this time of difficult reality. Much love to you both from a friend you have met, but have not known.
your holding on to hope is as real as jesus, let naysayers nay. they’ll remember your willingness to admit defeat but still accept hope when they walk through their own valley, and they will be grateful. i love the song.
I get it Bo. Thanks for being real. Praying for you and yours.
Even in your weakest moment, you ARE strong. He ‘IS’ your strong tower. Keep ‘tower’ dwelling! Loving you.
Precious Bo. I am behind you praying. Thank you for touching my soul this morning and once again reflecting our dear Lords love, grace and mercy.
Oh, Bo. It is so clear that you are not in denial. Your periphery has fallen away, and your focus is crystal clear. There is beauty in that, even in the hardest parts. Bless you. I am so deeply moved by your heart.
Thanks for sharing your heart Bo. Sometimes I wish I had the perfect word to encourage you & Steve and as I’m writing this I guess I do and that is we love you all and are praying for you.”Perfect Love” cast out all fear and “He is that perfect love. We see Him in your lives big time.
My heart well remembers the ALS road with my Dad. Holding on to Isaiah 43:1-2 for you all.
Dear Bo – it is a beautiful battlefield and our God is enough! The song says it all so well and I love it. Keep holding on to your anchor. Holding you and Steve up in prayer from across the world in Israel. I love you.
Geesh, a lot of hard stuff. Chris & I think about you & Steve everyday. We hold our breaths often & count our blessings & thank God for everyday Steve is alive but pray he doesn’t suffer. Don’t know if I should say that. We just love you & are glad we know you & pray for you everyday & a day doesn’t pass when we don’t wonder how you all really are. We just love you & are just so sorry.
Bo, I continue to pray for Team Stern. I know your are not in denial … It is through Him that we find our strength to face that which is impossible to face without Him. And my sis-in-law, who is battling her 2nd bout with breast cancer which has metastasized to her bones is also holding on to the song, “It Is Well”. We live you all!!
Whoa! For a minute there I was back on the roller coaster! I don’t envy you being there at the same time I envy you being there…..confusing I suppose. But one thing I am not confused about is how God spoke to me through our ALS experience, through mucous, through fear and through you Bo, and so many others. I do not have the ability to express myself very well but please know I am praying for you, praying for Steve, praying for your family, praying for a cure….
Hoping our meager prayers will carry you and Steve “through it all”. We love, respect and put our trust in the One who gives Hope, Grace & Mercy to all. Love you guys.
Jeremiah 17:7 Blessed is the one who trusts in the Lord; whose confidence is in him. May you FEEL and SEE God’s blessing Bo and Steve. Praying!
Julie Creek
Rene’s comment is exactly what I would have said.
That is my song, my manna from heaven, my Wilson, my anchor. I can’t tell you how many times it’s made me whole. The beauty you choose to hold onto to, it is holy and real and never denial. It is, as you say, all we have sometimes.
Oh, Steve, I am so sorry to hear of your suffering. I don’t know much about the cough assist, but I do know kids with SMA use it in the States (for some reason we don’t get offered it here).
There are medications you can use too. We’re tried one. Anyway, if you’re curious how it went for us and what it is, let me know, Bo.
xoxo
Love and grace to you and Steve.
I read your blogs regularly because you are real. You are authentic and you don’t sugar coat. You try and find the upside Which isn’t easy. Your trail seems hard and grueling at the moment. I used to run marathons so I know how much life and running parallel. I’m just so glad you have an anchor. I wish I could say everything is going to be ok and it will all turn out the way you want it to. But the truth is, it doesn’t always. One thing I know from my own hard trail is God gives beauty for ashes, strength for fears, gladness for mourning and peace for despair. Thanks for being real and sharing the hard times with the promises.