Greg can give good gifts. The girls used to return from shopping trips with him and give me little reports: “You are going to like what Dad got you.” “You are going to be surprised. He was so happy when he found your gift.”
Over the years, he has given me a bowl carved out of a South African railroad tie. a pansy glass bowl, an afghan with wolves on it, and a stained-glass birdbath. He’s given me plenty of gifts depicting my “mom animal,” as Abby teasingly calls blue herons. I have a painting of one surrounded by gardenias, a picture of one taking flight, a silver pendant necklace with a blue heron on the front and its prints on the back. He’s given me lighthearted gifts, too: a Bacon of the Month subscription, Calvin and Hobbes, scores of gourmet jellybeans.
Christmas of 2016 was our first Christmas without our elder daughter, April. The three of us were still sad and struggling, missing her and mourning the loss of her daughter, Stephanie Grace. But Greg had–as usual–gotten me a thoughtful gift: a fire pit from Lowe’s. It was fairly deluxe, large, with slate tiles around the edges, a wire top, and a plastic cover. He had positioned it in the perfect spot in the backyard and surrounded it with chairs.
Our family was weak, but, nevertheless, I am sure that he and Abby were, like me, hoping that we could spend some peaceful evenings around the firepit. Nights where we sat to warm our feet, swap stories, eat charred marshmallows. It was an attempt, an offering, a lot cast.
A normally phlegmatic guy, Greg diligently scouted the neighborhood for firewood, making three piles–two near the garden shed were kindling, while the one near the wooden gate was fat lighter. He would come home from a walk and tell Abby and me that he had to get the car: he’d seen some good firewood.
I think we truly thought that maybe if we all really tried, we could be campfire people.
In the year that followed, the three of us enjoyed a handful of fires–between Greg’s fatigue/early bedtime and Abby’s intense schedule, there was rarely a window when our moods and free time aligned. On a few Friday nights, we had guests over and sat together by the fire, chatting while their kids played on the nearby trampoline–and we were close enough to normal to taste it.
I’ve been looking at those overgrown, rotting woodpiles for two years now. There have been no more fires. Cancer number three took away any hope of joy–the misunderstandings it wrought, Greg once again enduring pain and disfigurement he could not share; me, the shadowed, weeping caregiver, forced again into medical duties far beyond the scope of any normal wife’s.
Twenty-one times cleaning a five-inch oozing, dehisced neck slit, that’s what broke us.
The twenty-one times that the insurance company said, “We’d rather destroy your marriage than spend $250+ on in-home nursing.”
Our marriage ended on those February days where I had to be what I could not–and my husband, forced to demand what I could not give, had to watch me break. Had to watch our younger daughter break. Had to listen to our wails and retching. Had to think about all he required. All he will continue to require.
Being a patient means needing a caregiver.
Being a patient for decades means needing a caregiver for decades.
It means watching one another suffer, daily.
And although there is a push to romanticize this relationship, to make it into a pinnacle of oneness–I have watched as doctors peered inside his lungs, I have sat at his bedside in a hospital for 31 days in Seattle and 12 more in Jacksonville, I have swabbed his mouth and brought him water and heated blankets–although the media and society want to make this into something beautiful, often it is not.
Often it is simply, endlessly painful.
The patient knows that the caregiver’s emotional suffering is caused by his physical suffering. And there is no end.
The caregiver observes the person she loves most suffer agonizing pain day after day, year after year. And there is no end.
And so you “live” in the loop.
I could vomit as I type those words. I feel it in my throat, right there. I am so disgusted by what has been required of us.
For nineteen of our twenty-nine years, we have lived in the loop.
Yes, we have seen God sustain us, heal us, set us on a rock, bind up our wounds. Yes, we know he has sung over us with joy, made a way where there was none, made abundant provision. Yes, we realize that He will do it again. That He will do it over and over and over again.
And we know, too, that we are not supposed to say, “This is where the suffering stops. This is where the pain ends.” We are not supposed to stop suffering together.
In front of our families and our best friends, we said, ” . . . until death do us part.”
There is strength and refuge in words. Years ago, I read an essay in Cosmopolitan–of all places—about the power in making a vow, in saying words, declaring them to be true, and then keeping them true.
I believe we both wanted to keep our words true.
I can’t type a but.
I can’t type but this was too much. I can’t say but we quit. I can’t say but the suffering has changed us so much that we can barely recognize ourselves, much less each other.
My therapist, last week, gently told me that I kept expecting him to change, kept expecting things to change, that he was old and I was old, that we were both so traumatized and had suffered so much, that there was going to be no change.
And I thought to myself, “What you have just defined is hope.”
She told me I still have hope.
Even when talking to lawyers, I have hope.
Even when the movers come tomorrow, I will have hope.
Hope refuses to be cast aside.
My biggest grief in all of this–in the tsunami of pain and sorrow of the past nine months after enduring eighteen years of preparatory tidal waves–is that I know God could move in this situation.
I have seen it before. Time and again. But I do not see it now.
And so, in the place of no apparent rescue, I live in the day. I do what is before me.
Months ago, a preacher told me that God sees me, walking around the same wall I’ve circled for years. The preacher told me to shout.
He said it was time.
This spring, I’ve had spiritual insights. Known things I shouldn’t. Called people and heard their surprise at what God had told me. But I’ve “gotten” little for myself.
And so, the other night, I shut myself in my bedroom, turned on praise and worship, and sang and prayed.
And God talked to me, He met me in that little room, where I sat in my grandmother’s chair, and He said this:
When you were an infant and did not even know how to pray, I was there. How absurd it is that you think I am not here now . . . My face never changes. My face never turns. My face is always upon you. It is easy to see that you were helpless there as an infant in the hospital bed . . . but you are just as helpless now. You need to have no illusions of your strength . . . There’s such power and recognition in the knowledge of what you are . . .
I am solidly behind you, even when you are as low as you can be, even when you are a lost cause, even when your dismay is great. I am right there beside you even when you cannot fathom that I would be near, even when your ugliness is so wretched that you do not think I can be near, I am.
You are so concerned that you are drifting, You think you can be in the ocean too long. You think you can walk too long, that you can walk and walk and walk and be lost. You are not lost. You are not far from Me.
You cannot see any beauty in all that has destroyed you. But I am the God of the pit and God of the mountain top, God even under the ocean.
I felt everything break during that prayer time, I felt it all break away. God had never spoken to me like that, talked to me that clearly for that long. But that day, He knew I was broken, and He bent low.
In the day of my distress, He answered me.
What a wonder: I cannot be in the ocean too long.
And, so, here still, I swim.