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.
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 firstname.lastname@example.org. We love you.
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,
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.
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.
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,
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.
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.