From Michelle. October 13, 2010.
Dear friends and family,
Our marathon drags on, in all it’s glorious monotony: the daily regimens of pills, stretches, therapies, bed baths, bowel programs, and so on, not to mention the predictable rhythms of life with small children. It has been harder to see the swells of the waves moving us forward as each day fades into the next with fewer ripples, and our attention is focused now on a faithfulness to the details, and an enduring discipline.
Each night after the kids are tucked in, Steve and I go through the same routine: the transfer to bed, the removal of Steve’s shoes, the heaving of the wheelchair into the corner and the plugging in, the undoing of the belly binder, the checking of the skin for pressure sores, the removal of one kind of pressure stocking and the putting on of another, the undressing which takes both of us, the careful arrangement of pillows, the sleeping pills to be gotten and the table placed just so with its morning pill at the ready, Steve’s phone within reach in case of emergency, the water pouch hanging with its tube carefully laid within reach and a sentry of urinals for nighttime bladder control. We are engaged in a carefully choreographed routine, framed by both care and incapacity. Surely there are pinpoints of glory in the wash of these daily regimens, but as Steve’s brother Mark put it during a visit, (and I am paraphrasing here), there is so much slogging for a few moments of glory.
Little freedoms from these constraints come steadily, as the routine bends and shifts with Steve’s ever changing skill set. Steve can now transfer himself to bed for the most part, though he still needs help with small, seemingly inconsequential things like adjustments to the pillow under his head, or flattening the bedding underneath him so that no wrinkles cause undue pressure to his skin. We are experimenting with freedom from the belly binder, and someday those impossible pressure stockings will follow. For us, this scene is mercifully fluid. For others with similar injuries, it remains the same for the rest of their lives.
This week, I have been meditating on the prayer that the eyes of my heart would be enlightened. I was reading Ephesians 1:17-18, and this fragment of Paul’s prayer for his Ephesian brothers and sisters struck a deep cord: “…that the God of our Lord Jesus Christ, the Father of Glory, may give you a spirit of wisdom and of revelation in the knowledge of him, having the eyes of your heart enlightened, that you may know what is the hope to which he has called you…” I have written, tentatively, about hope. Each day it is a balancing beam upon which I precariously shift my weight, looking for that perfect equilibrium between anticipation and submission, desire and acceptance. Steve is all the more precariously perched, and the temptation is to become so consumed by the superficial challenges and the disheartening limitations of this life that the deeper essence is missed. But here in this slower, less glamorous rhythm of days, in the middle stretch of the marathon, there is also the opportunity to know him more, to become reacquainted with the hope to which he has called us, to have our hearts enlightened. Elsewhere in the bible, in Romans 5:3-5, it says, “we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame…” It is a spiritual mystery that suffering with God, we might gain hope. Perhaps the key lies in the bigger picture, because through suffering, I know that I am reminded both of my weakness and of his strength, and I am also reminded that this current state is not God’s perfect and final answer – there is more on that other shore. And in his strength, and in that eternal glory lies my deepest hope. I don’t want to miss it.