Our goodbye had been coming so long. In fact, it seemed we had already said it so many times and in so many ways. With tears and words and recently, as words became more and more difficult for you, with raised eyebrows and tiny hand movements. Our language was second nature to us and so much of our communication revolved around this impending goodbye – but I was still surprised when it really, finally came.
The week had been a constant struggle to keep your oxygen levels up. The caregivers and I would check your pulse ox a million times each day, exchanging high fives with any number in the 90’s and worried glances when it dipped to dangerous levels. The shrill start-up alarm on the O2 machine became a comfort to me, knowing it was doing its job, helping you breathe, keeping you here. We tried – Crystal, Holly and I – to keep the concern out of our voices, but I know you knew. You’ve always known everything before I knew it.
On Friday night, we pulled the couches and cushy chairs into the room so we could be with you. We watched Hitch, because we needed an easy laugh. During the movie, you were awake, asleep, awake, asleep, until finally you asked to be taken to bed. Joe helped me transfer your fragile, failing body out of your chair and into bed. You asked me to adjust your head once or twice and I waited for more instructions because, let’s be honest, there were always more instructions. You, sweet man, are wonderful and kind , but you are a very, very particular patient and we both know I never got out of the night-time routine with less than eight head adjustments. So I waited. But you said nothing. I asked, “Are you good now, hon?” Nothing. “Do you need anything?” Nothing. I stroked your cheek and rubbed your arm, “Do you want me to read you a Psalm?” No response. So I asked Joe to bring me a chair and I sat by your bed and prayed and thought and read and slept off and on. I don’t know what I thought might happen, but I knew I didn’t want to miss it, couldn’t miss it.
After a long time, I fell into my bed beside yours, so thankful we weren’t in a hospital. I was so glad to be near you and near our family, surrounded by the sights and sounds that have defined our life together.
On Saturday, you woke up early and Joe again helped with the transfer from bed to chair. You seemed awake and alert. You told me you loved me so many times and in so many ways as I moved around you to do the morning routine and I treasure each and every one of those, but I could also tell that you were miserable. Joe sat with you and visited (he’s a really great brother-in-law, isn’t he?) while I took a little time to read and write a blog post. Every time I checked on you, it seemed you were less aware. Less there. Holly was the caregiver for the day and she arrived at 10, but much of the morning work had already been done, so she said to you, “What do you need this morning, Steve?” Your eyes closed and opened, but no answer came out. I began asking you questions, but no response. You were there and breathing, but you were also somewhere else entirely. After a few minutes, you looked at me and I knew you were back. It was unsettling, but I still didn’t imagine you were two hours from heaven.
I had been struggling with a fierce headache all morning which I had begun to believe might be sinus-related, so I wanted to run to the store and grab something I could take for it. And I know, our house was filled with every possible medication, and yet…no sinus stuff. All week, you had wanted me to be near you and seemed panicky when I wasn’t, so I checked to make sure you were good with me going to the store. You nodded yes, eyes glassy and staring at the tv. “Who’s winning?” I asked, because you will always talk about golf and the British Open is one of your favorites (but choosing a favorite golf tournament for you is like choosing a favorite child). I asked again and you just shook your head and said, “I don’t know.” And it sounds crazy, but that’s when I knew we were closer than I had thought. Just like you knew you were really sick when your golf swing suffered, I knew you were really leaving me when golf no longer mattered.
I went to the store with my sister, but my heart was pounding the whole time. Heavy tension hung over us, so we moved fast and talked little. It wasn’t that I was afraid you would die while I was gone, mostly I was afraid you would need me.
We were home in a matter of minutes and I went straight to your chair to check on you. I put my hand on your hand and you looked up at me, trying to see through the cob webs of your impending transition and you mouthed your trademark line, “Hello, beautiful.” And by the way, thank you for that. Thank you for being so consistent with that for so long. You built something in me with that line. You built my belief system about who I am to you. Really, sir, so many thank yous.
Corey and Whitney had stopped by to visit and so I hugged the babies and sent Tori on a burger run. I was snuggling baby Finn when Holly yelled my name and her voice told me all I needed to know. I ran to you and knew. “How are you Steve?” I yelled at you and you just shook your head, gasping for air as the color drained from your skin. The pulse oximeter was attached to your finger and we watched as it dropped from 75 to 69 to 64 and down. And I could feel heaven arriving. It was pressing in on us as you struggled for breath and I struggled for breath and somewhere in my breaking heart I heard the words, “Help him home.” So I leaned in close and told you how proud we were of you. How you had fought so valiantly and well. I told you how brave and strong you were and how excited Jesus was to meet you and hold you and give you a good meal. I told you we would be fine, our kids would be strong and would stay soft. I didn’t tell you how desperately I would miss you because I didn’t want you to fight any harder or longer than you already had. I felt like a midwife. Soon, all the family surrounded me and began encouraging you, too. We prayed and stroked your hands and feet and sobbed and told you all we felt you needed to know about the life you had lived and the life that was waiting just beyond this moment. Your breathing was so shallow, but you were still with us so I relinquished my spot by your face so that our kids could step in close and say soft, secret words to you as you made your journey home. Your dearest friend, Riley, arrived with five minutes to spare and when I told you, “Riley is here,” I saw your eyebrows move. It always mattered to you when Riley came.
The whole thing felt both utterly chaotic and completely in order. There were moments when it would hit me that all a the details had come together to make this as beautiful as it could be. Our people were there. The sun was shining. We were as ready as we would ever be.
We turned off the British Open and turned on a worship playlist. As the sounds and songs of heaven filled the room, we said we’d see you so, so soon. At 12:52, with Beauty For Ashes playing in the background, you flew away home. And that’s when I fell at your feet and cried all my tears. So many tears. Pouring and gasping and pouring and gasping out an offering of gratitude to Jesus for the gift of you. I imagine I was pouring out my love at your feet at the exact moment you were pouring out your love at His. I heard things happening around me, others crying and praying, but I mostly heard the sound of my Good Shepherd. I saw His smile and heard His voice saying, “Thank you, Bo, I’ll take it from here.” And all the pieces of my life came together and apart all at once in one afternoon.
When the dust had settled and everyone had taken some time with you, I gathered us all together around you to pray. Corey said a brilliant, beautiful prayer, though I don’t remember any of the words, and then we began to sing
Bless the Lord, O my soul,
O my soul
Worship His holy name
Sing like never before
O my soul
I’ll Worship His holy name
And you know how your family sings, so you know it was beyond beautiful. Evan had rushed Josiah home from camp so there were like a half dozen amazing worship leaders in your home going choir. I hope heaven heard it, even though I know the choirs there are probably pretty great too.
So, here I am on day four. Still standing. Still have a headache. Wondering how I’ll do this without you. The past four years have been consuming, discouraging, exhausting, unnerving and beautiful. You became the very center of my life, my attention, my purpose, my to-do list and my heart. Now my time is free, but my heart is not. It’s odd, leaving the house whenever I want to. It’s strangely wonderful and at the same time dark and disorienting.
My facebook is slammed with messages of hope and strength. People love you, sir. I mean – they love you. Your life made such a mark on your world. And we miss you desperately. I’m not too proud to say I am unspeakably sad for me – but I can’t muster up even one minute of sadness for you. I watched your life. I watched you struggle to breathe and move. I watched you sacrifice all your dignity on the altar of ALS and I am so happy for your new life that sometimes I’m breathless with the thought of what you must be doing and feeling and tasting.
So, that is the story of the day you were born. Really, truly born into life. That I was a witness to the miracle is my dearest, sweetest treasure.
I will always, always love you.
Until we meet again,
Dear friends: This blog post breaks all the rules. It’s too long. Too unedited. Too personal. But I needed to write it – to get it out, to get it on paper, as a part of the process. I share it because I think Steve would want me to. I think – in fact, I know – that he would want you to know about this 19,445th day in his life. He would want you to know how God showed up to lead him home…and he would want you to know He loves you.
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.