The Agony of a Sound Mind - September 16, 2021

What is happening in this house?” I groaned aloud. Joseph’s answer was strong, his voice weak.

“Everyone’s in agony,” he said. “That’s what’s happening."

The spirits of the children are rapidly dwindling. Their nerves are tattered and frayed. It’s close to unbearable for Joseph and me to witness. These are uncharted parenting waters.

Everyday tasks now sworn enemies. We’re desperately trying to save one child from drawing too far inward. Another excels in daily responsibilities and appearances but cracks at the heart, splitting open with sorrow disguised as rage over petty obstacles. By 4pm she’s convinced disobedient inanimate object such as toothbrushes and kitchen cupboards are personally attacking her.

I cannot bring myself to discipline anguish. It seems both futile and cruel. Behavior that once called for consequences, lessons and lectures is now met with open arms and stroked hair.

Joseph dwells in the corner of a very lively living room. Unable to move or fully participate, he is alert enough to desire actively parenting his children and loving his wife. He is dying just as he lives, with his God and his family as his top priority.

For me, I'm trying to walk with Joseph in death and parent our children in living. Which parenting decisions do I include him in? I don’t want to stress him out but I also don’t want him to feel we are living as if he’s already gone.

Our family life has been consolidated into one very active room. We eat, pray, do homework, and read together in the living room. We are soaking in every ounce of this chapter in our family story. Joseph and I also do all his medical/hygienic care and sleep in this room.

Today I slipped into the back bathroom to brush my teeth while Joseph napped. He awoke, needing me but unable to call loud enough for me to hear. When I returned, we bemoaned together the panic and frustration such a simple situation caused us both.

I haven’t been alone for 5 weeks. And I have never been lonelier.

Joseph and I are lonely people. Not in an Eeyore type of way. Please don’t worry. We are genuinely happy and content. Part of what initially drew us to each other is that neither of us has ever felt understood, even by our closest friends and family members (much to their dismay). We found in one another a drink of cool spring water amid the persistent drought of living with a haunted personality. Alone together has been a comfortable and safe place for us.

The kids require tenfold of what they needed from me in what we now refer to as “before times.” It is by grace alone I am even getting out of bed. I’m so scared for the day I cannot muster it up because I know it will come for me. Then I find myself swimming in the dirty swamp water that is guilt. I foolishly can’t shake that a stronger faith would be able to avoid falling apart. Desperation is my only motivator. It’s unhealthy, and yet I’m thankful to have it as it gets me out of bed. No one thrives in this life situation. Survival is enough. Even so, the bare minimum currently seems too lofty a goal.

While there are some parts of life I can let fall into ruin, I cannot (and will not) take a step back from parenting. Our children have already seen such suffering in their short lives. Even in the “before times” we faced unimaginable hardships as a family.

We’ve never found comfort in feeling sorry for ourselves. Suffering holds high worth in our home. We are intentional about teaching the value of suffering to our kids. It is a pillar of our life and holds a place on the list of things we offer thanksgiving for as a family.

We can’t help but feel like this is a test. We are drowning in our desperation to pass the test. I’m so scared I’ll roll over and give up that sometimes I wonder if I’m taunting suffering. My pride an angry beast, begging and daring suffering to come and get me so I can win. If that’s the case, how many battles will I have to lose before I surrender?

Joseph’s vigor is abandoning him in daily trickles. And yet, he is of sounds mind.

We see death peeking through the windows of our home, and we await the knock on the door. None of us want to live this way any longer. We are emotionally impoverished but know the alternative will be far worse.

Being sound of mind is a double-edged sword. For the first time, anger is a resident taking up real estate in our minds and hearts. The unfairness of it all is something Joseph and I can both (barely) come to grips with for ourselves and as a couple.

Unfortunately, the heart of a parent isn’t as understanding. We are angry for our children. One of our girls is consumed with worry about what life will look like without daddy. She’s convinced there is no path forward for us as a family. During the day, I assure her I don’t know how, and I don’t know when, but I do know we ARE going to be okay. She must trust me and trust God.

But then the sun and the children drift to sleep, and Joseph and I sit and cry. We don’t want our children to have to question survival (in any way) or learn to surrender to blind trust. Those are grownup lessons. We are filled with sorrow and rage over this each night. Rinse. Repeat.

I want to pause every responsibility I have so that I can mourn the life I love and the dreams we still reach for before we recall they’ve vanished. “We should take a trip there,” and, “Someday we should do that” are phrases that still fall from our mouths before they’re followed by the painful silence of the realization of recollection.

The children still pray for a miracle each night. I bite my lip as we remind them (and ourselves) that miracles do happen. If not now for us, for someone, somewhere.

Simultaneously, Joseph’s body wans from the top and bottom as the cancer swells in his middle. His arms and legs are mere silhouettes of what they once were. The sight of them frightens the children and sparks protection in me, just as real shadows tend to do.

Last week our Kindergartener brought home the inevitable first sickness of the school year. The kids all spent a good week both physically and mentally unwell. It ‘wasn’t until I noticed my own shirt was drenched that I realized I too was sick.

Each one of our children have come to me privately to ask, “what’s the point of any of this?” Each one of them question the meaning of a life that holds such suffering. Each one of them feels alone in their inquiry.

We are living in the agony of anticipation. Joseph must sit and witness it all, unable to move or care for himself. A brilliant mind and spirit, trapped within a failing body. We are thankful for this time of torture. The blessing and agony of a sound mind is painfully confusing and abundantly clear.

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***It gives me hives to share such intimate glimpses into our pain. I cope through writing. Joseph has always believed I must share my writing. While sharing to this magnitude is difficult for me, I do it to honor his wishes for me. He knows me so well. 😊 Additionally, we are all getting the proper professional assistance needed to walk this path. Hospice (and their many resources) is a beautiful thing.