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.