It’s been three weeks since we were told Joseph had 2-3 days to live and I raced home to rearrange our living room and make room for a hospice bed.
We made the decision to move him out of the hospital and into home hospice care so he could say goodbye to our children. They aren’t allowed in the hospital due to Covid restrictions.
Since then, we’ve welcomed numerous visitors into our home. People have come to cry, say goodbye, pray and laugh with us. We celebrated our 15th wedding anniversary with our traditional birthday party for our family. Friends took care of school supply and back to school shopping and the kids did fashion shows in the living room so daddy could participate in the frenzy that is back to school.
The first day of school came and our family made yet another big change to our routine.
Daddy has always had the “morning shift.” He does breakfast and school drop off. But seasons change. In both the natural world and human life.
There are big changes happening inside and outside of our home. Our road is under construction. There are machines, noises and dirt everywhere. On the first day, I maneuvered Laney’s wheelchair through the uneven terrain of our street to meet the school bus at the corner. I grumbled to myself about how we don’t need this dirty mess in our lives right now the entire way.
There I was, walking the kids to the bus at 7am, mud and dirt flying up around me as I tried to find my way around the rocks.
It’s hard to see through the mud. Wiping it away only smudges things more. Sometimes, we just need to wait. The mud will dry and blow away on its own. Now and again I’m impatient, and I end up making things worse.
I had an old car once with broken windshield sprayers. I almost crashed it in Minneapolis rush hour due to the trucks in front of me kicking mud up onto my windshield and impairing my vision. After that day I started carrying a spray bottle of water in the car. When my windshield became too muddy, I would roll my window down, stick my arm out and spray. It would clear my sight for a moment, and then dry a muddy mess. It wasn’t ideal, but resourcefulness is born in necessity.
This summer, I’ve been reminded of that old car and my broken windshield sprayers. Due to an autoimmune disorder, my body identifies my eyes as foreign objects and attacks them as such. It’s painful and causes “floaters” that obstruct my vision. Resting my eyes was imperative. The doctor ordered me to dilate my eyes each day after work. No reading, no screens, no driving.
These vision “glitches” have been like my very own broken windshield. Clouded with mud and requiring more attention than when working properly. Car problems and health problems are similar in my mind. They both cause anxiety and are too expensive.
Even though I couldn’t see this summer, I found clarity. As the dirt in my physical vision became more of a challenge, my over-all vision became much clearer. My priorities were easier to identify and define. The things I say yes to in my life effortlessly divided into two categories; the things I truly want to do and the things I feel I should do or are too afraid not to do.
And then Joseph was diagnosed with stage IV cancer.
I thought of these priorities this week as I finally worked up the courage to tackle an essential and emotionally laborious task. Our desire is to be buried together. I had a rare opportunity to take an appointment. The fact that it had rained for several days slipped my mind when I slid into my sandals and headed to the cemetery. I found myself standing alone in the cemetery, covered in mud, as I shopped for our final resting place.
As I picked out our final home, I couldn’t help but wonder what I am going to do with myself in the “in-between.” How long will the period between when he is buried and I ultimately join him be? What will I do with myself?
I’m jealous. I wish it were me. I want to be the one to lay under our names first. But there are children to raise and calls to answer. I’m distraught that we aren’t going to be in the same place. We hate being apart. When I travel Joseph sleeps in the chair. He always says he misses me too much to sleep in the bed without me. We are not good at being separated and frankly, I don’t want to be good at being apart.
A friend compared our current state to walking together towards a fork in the road that will require us to take separate paths. The beauty of the walk is spectacular. It’s lit up with the heightened splendor of something temporal. For most of our peers, their fork is off in the distance. For us, we’ve never had to squint to see it. It’s something we’ve both had in our field of vision our entire marriage. Things that shine bright don’t always shine long. I’ve always known that standing in the warmth of the light will eventually lead me to living in the cool and damp shadow.
Right now, the light is growing so brightly it blinds. My blinking is now labored, much like Joseph’s breathe. But someone needs to pack the lunches and walk the children through the mud and construction to catch the bus.
Our youngest started Kindergarten and was sad daddy wasn’t going to be there. So, once the bus pulled away, I speed off to the school to watch him proudly carry his lunch box in for his first full day of school.
He strolled in, a newly minted “big kid.” He held his head high and I bowed mine, shielding my damaged eyes from the sun and concealing the tears flowing down my face. It was the first “first” I would experience without Joseph’s hand there to grasp. I stood outside the school lamenting how I don’t want to do any of it without Joseph. I also don’t want to miss it.
The pain of this swept over me, pocketing both my breathe and my sense of identity on its way. I ever so briefly completely forgot who and where I was.
My eyes (sensitive to the sun in their condition and filled with the tears of kindergarten sendoff) left me stumbling through the school parking lot. By the time I attempted to enter the second wrong silver mini-van, I realized I was extremely disoriented. I stumbled, crying, toward a group of moms.
With snot dripping down my nose I explained I couldn’t see and couldn’t remember which van was mine. I then broke down for the first time in weeks and rambled on about how embarrassed I was. I was loved on and pointed to my van. I drove off, feeling shameful and soiled. It’s hard to smile and say you’re fine when you just had to publicly ask which vehicle is yours.
I’m thankful for those willing to point me in the right direction when I’m unable to see the path for myself.
Joseph is still walking home. He’s taking a bit of a stroll, but that’s fairly standard for him. He likes to soak in every moment of an experience, and he generally teaches me something in the process.
Until he is finished with his transition to a new home, we will be here with him, cherishing the walk, even if its muddy.