Boxes of old papers and photographs, stacks of books, piles of medical records and therapy reports I need to scan and organize. The loft in our small town home has become the black hole of all the little bits of our life for which we have no clear cut place. The loose ends, the question marks —“Do we need to save this? What if we need this?”
While my husband has been in school and working every weekend our time together has been limited. Much of that time is taken up with things like, oh, parenting Nik and dealing with his ongoing health issues; there is never any time or energy left over for tackling any but the smallest of projects around the house.
Niksdad’s recent job loss turned out to be a bit of a mixed blessing this week. He was home and wasn’t buried in the books so we had a chance to finally tackle the loft. It’s not finished by a long shot but the work has begun; the “heavy lifting” of moving filing cabinets, repairing a sagging book case —the things I cannot do myself while also keeping a watchful eye on Nik —are complete. The difference is remarkable; the loft feels larger already in spite of the boxes still stacked in the middle of the room.
I can finally imagine what it will look like when we have completed the project. More to the point, I can already feel the sense of ease which permeates the space. Where we once felt squeezed into our little corners of the room —where our desks sit tucked into opposite corners —already it seems more tranquil, more comfortable. We both wonder why it took us so long to make this space —where we spend so much waking time— our own. I say it was the vagaries of time and our limited energy supply but I think, in my heart, it goes deeper.
Nik’s recent bout of gastrointestinal illness has been very disturbing; not only has it gone on longer than any other virus he’s ever had, its intensity is unnerving when the waves wash over him. He is unable to communicate the nature of the pain with more than screams and howls as he doubles over or as he shrieks and kicks his legs to seek some relief. He clasps his long fingered hands together over and over asking us to help him, to ease his pain. To make it stop. We feel helpless to do more than hold him and croon soothing words as we rub his belly or his head, to clean up the aftermath of his body’s release.
This latest development, the hardening of his belly as his too slender body braces itself for the impending pain and uncontrollable outcome, frightens me. It seems to last for hours and I am gripped with a fear that we are missing something that could mean the difference between life and death. The recent loss of beautiful Evan sits heavily on my heart as I struggle with my desire to call his mother, Vicki, for advice and my unwillingness to ask her to relive that horrible pain. I cannot; it would be too cruel.
My husband, the nurse, is quick to assure me that Nik’s bowel sounds are good and his belly does soften some after he’s had a bout of diarrhea —though not nearly back to “normal” enough to ease my fears. I return to another memory packed away in my own mental loft —a place where there is not and never will be a neat, tidy, compartmentalized storage system for all the hurts and memories of watching my son struggle through so much of his early life.
The discovery of Nik’s intestinal malrotation was unexpected; he’d been showing many of the same symptoms that he has over the past two weeks and he had normal bowel sounds then, too. Then, he was considered a “very lucky little boy”; the doctors discovered a partial volvulus —an obstruction —which they said was “a time bomb waiting to go off.”
I want to assume there is no such time bomb awaiting us now but the memories of all those times we thought we might lose Nik have built themselves up into a thick, smooth scar upon which I worry —much the same way others might rub a stone or rosary beads —each time Nik’s health takes an unexpected turn. The history is too strong and the memories run too deep.
I want to shed the burden but I seem unable to. There are times it is the thing which keeps me pressing forward for answers on Nik’s behalf. I fear the complacency.
I sit at my desk, still wedged into the corner but less crowded now. The room is the same yet it feels different. Attitude? Belief? Perception? I am uncertain what makes the difference as I begin to make my way through the boxes of old hospital bills and NICU discharge reports. ”What if I need this? What if Nik needs me to have this?”
I examine the pages, searching for clues —answers someone may have overlooked. On those same pages, I see hope; for each date racked up on that enormously large hospital bill, it was another day my son lived. Another day of getting stronger, healthier —closer to coming home.
I realize the answers I seek are not to be found on those pages. Still, I am unable to let go.