There are so many things I’ve told myself I could never do. Have a baby, buy a house, be a functioning grown up…😊 It just all looked so difficult. And yet, when the times comes and something is needed, I’ve always found a way. I’m not special. Instincts kick in for survival. It’s human nature. It’s basic instinct. It’s a totally normal thing and a pretty good movie, too. Each evening, I don medical gloves and open a kit containing a bottle with a hose and sterile
equipment. I remove the dressing I placed the previous night; disinfect Joseph’s skin and abdominal catheter and I drain out the fluid his body is making to fight off the cancer.
The first night I was petrified. What if I mess it up? What if this germaphobe accidentally does something wrong and the literal HOLE in his body with a tube coming out of it gets infected? As I wait for the bottle to fill, I think about how if I would tell Past Holly that Future Holly would be doing this, she would respond with a dramatic, “NO WAY. I CAN’T.”
But, it needs to be done. So, I learned. First with a nurse, then with a video. I can now do it in my sleep.
Then, this week, a fever. Infection has become my new “what if.” Each time I name a new one we seem to arrive within it instantly. Transported by some sort of worm hole as if we have summoned it. We once again found ourselves standing at the edge of a cliff.
An ER visit revealed an internal infection caused by a hole in the interior of Joseph’s stomach. It also revealed his cancer has spread much more rapidly than our worst “what ifs” imagined.
We were given two very scary options and told we had to decide within the half hour. These details I’ll keep private between Joseph and I, but they resulted in a middle of the night surgery.
We set the goal of returning home to our children and we called for a priest. In the wings of the OR the surgical nurses stood by with bowed heads as I held Joseph’s hand and he was given the Sacrament. He was annotated and the oil was placed on his forehead. The priest then took my hands, opened them, and rubbed the remaining oil into my skin. We cried, said what we wanted to say to one another and prayed. Next to proclaiming our material vows, it was the most intimate moment of our marriage.
Joseph has achieved his goal of us being together as a family. He has come home, and we have welcomed hospice with him. It is now time for us to enter an even more intimate phase of our marriage and for Joseph, of his life here on earth.
Yesterday was a very difficult day. I came home to gather our kids on our bed and share with them that hospice was coming home with Daddy. We’re now seeing the pain ooze out of the cracks of each of their broken hearts.
One is angry about everything other than this very big thing. One has stolen Joseph’s favorite t-shirt (Jurassic Park). She sniffs it as she cries herself to sleep. She snuggles it as a comfort blankie at night and wears it around her shoulders as a cape during the day.
Last night, our 13-year-old crawled into bed with me for the first time in years. I awoke to her spooning me and stroking my back. I had been crying in my sleep and didn’t know it. I awoke to find my face wet and my child holding me.
As for me, I feel a bit like Dorothy in The Wizard of Oz. The color-coded stripes of hospital corridors a less pleasant version of a yellow brick road. There is no wizard here. There are just two evil antagonists; one in the form of rapidly producing cancer cells and the other the unbeatable beast and sworn enemy of the ill: infection.
Internal enemies are always worse than the external ones. External enemies distract us by convincing us to spend our energies on the external world. Physical, mental, or spiritual – crumbling interiors are humanity’s biggest threat. Unfortunately, unlike our singing friend Dorothy, I cannot click my heels and return home after battling these internal demons. My earthly home is Joseph, and he is being called to his eternal home.
I’ve intentionally reserved Joseph’s feelings as they are not mine to share. I will just say that I am honored to be the keeper of these sentiments. I will eventually share most of them with our children. They remind me of a private love letter. Bursting with the joy of unashamed beauty and longing and peppered with the underbelly of fear, vulnerability, and a touch of folly. A few of them will remain solely in my heart. They’re locked away just for me. My most precious jewels from my treasured love. As I write this, I’m watching Joseph sleep in the corner of our living room, which has been transformed into his own little bedroom. His nightside table holds all of his medications and pictures drawn by our children. There is a laundry basket of medical supplies at the foot of his hospice bed. Right where our Christmas tree once stood. We are scared. We are sad. We are broken. We are honored. We have questions. We have anger. We have hope. We believe.