The hardest question I’m asked right now—the very hardest question—is: “How are you?”
It’s not hard because my life is bad. It’s hard because I’m just feeling ... so many things. The range of emotions I feel on any given day swings wildly from calm and grateful to confused and frustrated.
My family is blessed to be together on this road, but we are weary. Steve is weary. His body is used up and his spirit is struggling to stay comfortable in such ill-fitting skin. It’s almost like the inner Steve is growing as rapidly as the outer man is failing and like a baby outgrows the womb, the real Steve is ready to breathe the fresh air of real life. The process is the most beautiful and brutal thing I’ve ever witnessed.
We talk often and openly of heaven. In fact, we talk about it in ways that might make other people uncomfortable, but heaven is not a cheap consolation prize to us—it’s the best case scenario. We talk about the people he can’t wait to see (his dad, my grandpa, Wendell Smith).
I talk about what the libraries must be like and how it must look right now, all decorated for Christmas, and he talks about the golf courses. Yesterday, as I was pouring yet another carton of vanilla formula through his feeding tube and realizing it’s been nearly 10 months since he’s tasted any food, we talked about how fun it will be to get breakfast in heaven. We are not afraid of heaven.
Our home is almost constantly filled with people. Hospice nurses, health aides, social workers. The caregivers who work for us and take such amazing care of Steve so that I have some breaks. Friends and family coming to say deep words. People dropping off dinners and groceries and flowers. I look forward to the day when my house is quiet and private again and I can be the one taking the casseroles and flowers to people I love, but until then I know for certain that we would be lost without this unbroken stream of support and sympathy. Just so lost.
Our kids are exactly as you might imagine. Tired. Heartbroken. Hopeful. Strong. They surround their dad like sentinels, marching as far and as long with him on this road through the Shadowlands as they can, knowing the path will eventually narrow and there will only be room for one. Until then, we march. And we write. And take photos. And say the words we need to say to honor the life of the man we love the most.
If you’ve read this far, you might be thinking, “She’s processing all of this so well.” False. I have never felt more weak, more inadequate or more overwhelmed. Steve’s needs are immense. The more care he needs, the fewer people there are who are able to give it. And though we are surrounded by such a brilliant army on this battlefield, I realize that everyone can opt in and out of the fight except for me.
I don’t want to opt out, but there are moments when I am certain I will break beneath the weight of responsibility and the sorrow always bubbling like a pot of stew on the back burner. I am learning both how strong and how weak I am. I am learning to receive help from those who can give it and make no apologies for the fact that I need it. I am learning to listen to the voices of those who have gone before me on this road without being defined or confined by them. I am learning, now more than ever, to lean hard on the grace of Jesus.
So, that’s a little update from our world. I hope it breathes hope, because we really do feel that so much of the time. And the fact that we feel it any of the time during this fierce fight is nothing less than a Christmas miracle. Jesus, Emmanuel, came to our sad and broken world to bring endless, eternal hope. This is why our weary world rejoices. This is why we’re still able to dance in the kitchen. His love brings comfort and joy, and we are drinking it in this season and always.
Oh, how we love you,
Bo for Team Stern
“We are troubled on every side, yet not distressed; we are perplexed, but not in despair; persecuted, but not forsaken; cast down, but not destroyed; and always carrying around in the body the death of the Lord Jesus, that also the life of Jesus might be expressed in our bodies” (2 Cor. 4:9).
Bo Stern is a sought-after speaker and writer, and a teaching pastor at Westside Church in Bend, Oregon. She is passionately involved in raising awareness and funding for ALS (Lou Gehrig’s) research, with which her husband was diagnosed in 2011. For more info and to follow her story, visit bostern.com.