The world keeps turning, regardless of what’s going on in the personal lives of its inhabitants. This perpetual turning helps to define both the splendor and cruelty of life.
I’ve been hibernating. Joseph’s needs have increased, and the normal demands of life are growing more difficult for us to undertake.
I’m not one for sweeping dirt under the rug. We’re also not fancy. I’ve tried a few times in my life. Those feeble attempts to putting on airs has almost always led to a private or public humiliation. I’m a run to the Kwik Trip in my pajamas type of gal. Call me relatable or just plain lazy, I’ve never had the energy to pretend I’m someone I’m not.
I just don’t know what to say right now. I’m out of words and out of tears. I’m a mass-market children’s toy that’s been reset to factory mode. The creepy robot mechanically moving through the day.
Joseph is experiencing a lengthy and agonizing death. One the kids and I must witness. He remains just alert enough to see how deeply it cuts us while he’s forced to grapple with it himself. The torment of this is too horrific and too beautiful to share in detail.
Our current family life reminds me of a herd of elephants in the wild. Forming a circle of protection around our most vulnerable to safeguard their wellbeing and their dignity from predators who can sniff out fragility. A heavy weight becoming less burdensome and more powerful when combined to surround the least among us, giving them the space and security needed to focus on the crisis at hand.
Like the creatures of the wild, our humanness desires and relies on the same community camaraderie. Unfortunatly, humans can sometimes be afflicted by too many distractions, pulling us away from our herd.
These distractions groom us to focus on ourselves. Possessions. Accolades. Our culture tells us to collect and horde them. The busyness of chasing what we don’t even want is exalted. And yet, we remain capable of forming the circle of protection around those who need it most when the time comes. In the wild it’s called instinct. In humanity, it’s a call.
Our family is privileged to have a wealth many cannot afford - the friends, family and community capable and willing to circle around us, making it possible for me bare the weight of standing guard over Joseph.
I once played a game with the kids in which they identified each family member with an animal. I secretly hoped to be associated with the owl. Anna didn’t hesitate in associating me with a bear.
Her explanation was quick and passionate, “You like to hibernate but when you or your family are threatened you get fierce.”
She’s right. Wise and intuitive, maybe she’s the owl in the family.
Our day-to-day is excruciating, but also offers previews of the exhilaration that comes with the shedding of distractions. Priorities can be difficult to identify amid the noise. Modern life is full of mental and spiritual clutter. Priorities become crystal clear in times of crisis.
Joseph has now been unable to move from his bed for six weeks. Conversation is all that remains. Our talks are spontaneous but generally come on the heels of a distressing event or day. They are lengthy, shrewd and intimate. The details of what these talks entail are ours. I will, however, share what they don’t entail. Not once have we discussed careers, the pursuit of money or our earthly possessions. Basic needs are the only practicality we discuss. Once those are met, there are just so many more important things to spend our energies on.
Six months ago, we were working on a deadline for a business venture we invested elbow grease and capitol into. We were also shopping for a larger van to accommodate what we thought was an immediate need. These items that were atop our priority list such a short time ago have now fallen off the list completely.
Instead, we speak in gratitude for the unconventional approach we’ve always had to family life. Due to Joseph’s health pre-cancer, we have always prioritized experiences as a couple and as a family. We never waited to take a trip or put off something we wanted to do with our children. We aren’t in the practice of looking to “someday.” If something is important now, NOW is the time. We don’t feel called to put many resources or attention into making our home or clothing impressive. Our most prized physical possessions are our books. Instead, we’ve collected a fortune of experiences and memories many put off for retirement.
We look back and see our mistakes, of which there were many. We’ve confident we got this one right, though. We packed a lot of living into our 15 years together. Often done with challenging health hurdles.
These are the treasures we’ve been pulling out and sharing over the past month. They shine with nostalgia and have the power to dim our souls a bit. We’re grieving the loss of future experiences together as a family. For Joseph, this is very painful, as he isn’t an elderly man on his death bed. His body betrays the life perspective of a 40-year-old man with a family. His soul tells him to protect, provide and aid in the forming of the character of his children and his family. His body is telling him he won’t be doing those things here on earth.
Because we’ve always made the absolute most of what we have in the present moment, the kids and I decided to brainstorm the experiences and memories we can still create as a family.
Joseph loves Halloween and we go big at our house. We have a family tradition of doing a group costume and taking an annual October family picture to reveal the year’s Rutchik family
Halloween costume.
Last weekend, we surprised Joseph by moving up Halloween. We threw a Halloween party for ourselves, complete with games and prizes. We selected a pirate theme in honor of Joseph’s interest in pirate history. Laney’s tradition is to incorporate a green face character into our yearly ritual. This year she declared daddy the captain of the pirate ship - and herself as his trusty green parrot. We turned his hospice bed into a pirate ship complete with a cross as our ships crest. We awoke him from a nap by screaming HAPPY HALLOWEEN and waving our ship’s flag.
Although we love a good experience, our repartee has always been the glue that binds us as a couple and as a family. Joseph and I feel in love while lingering at events and meals later than we should have. We’d get lost in talks of the meaning of it all and our dreams for our place in it.
We’re sharing our home and our hearts with pain and grief. They are unpredictable roommates who will now be in residence for the rest of our lives. We’re forced to make room for them, but we won’t abandon our way of life.
While there are moments that go beyond beauty and encroach upon holy, living this way is not sustainable. Not for me as caretaker, for our children living in the fear of anticipation and especially not for Joseph, as the combatant. These waters are treacherous and dangerous. And yet, I want to swim in them until my lips are blue and the whistle blows signaling the first bolt of lightning and forces us from the water.
To linger is to remain. Like one who knows there is a secret others may miss. We will remain steadfast in faith – especially in the unknown. Life is worth a little lingering, especially when the company is good.