Consistency, Dependability, Routine

There is so very little in my life that is consistent or reliable. A great part of that is because I am inconsistent by nature, and the remainder because the winds of change blow hard. No pun intended, life has simply been filled with change, both drastic and inconsequential. During the summer, especially- there is no rhyme or reason to the ebb and flow of events. Emily comes and goes, Mike works and works and sometimes comes home for a night or a day, or maybe two. There is no nine to five for us, no traditional weeks and weekends, often even night and day aren't separate entities. Sometimes I cook, sometimes we eat out, nothing is planned. While I enjoy my little gypsy brain, changeable as the summer breeze, I sometimes get lost inside it.

My life has made a similar pattern, starting journeys that rarely, if ever end where or how I thought they would. I try to take from them nonetheless, to learn about myself and learn how to play to my strengths (adaptability!), and improve or atone for my weaknesses. There's not a hell of a lot of comfort in it. I wouldn't mind knowing what it feels like to at least think you know what's coming next.

Lately I've been struck by the 8 O'clock hour. Whether Emily is home or at her Dad's, whether Mike is at work or at home, whether the bank account is full or in the red, if it's January or June, at home or on the road, I am in the same place at 8 O'clock.

At 8 O'clock, I am in a chair, usually rocking, always to the steady buzz of the nebulizer. Minor changes to the routine happen, add meds, increase calorie content of feedings, what have you. But mostly it goes like this:

Out of the bath and into the big fluffy towel. Clean the G tube stoma, play the 'wanna wanna' hair drying game, fresh diaper and jammies. Give pacifier & wrap up in blanket, get rewarded with the sleepy sound and a curly little head nuzzling into my neck. Sit down in the chair. Any chair, any place, but usually the big blue Lazy Boy that once belonged to a friend's father, but now lives in the corner of the undersea room. The one he loves to climb if you look away for even a second. His arm goes under my arm and around my back and he holds on to my shirt. I lean over and touch foreheads, bump noses, before picking up the spoon pre-filled with apple sauce. Inside the applesauce is a Prevacid Solutab, soft and partially dissolved- on top are three Pancreaze. The spoon goes in, even if he's fought mercilessly against his enzymes all day. He giggles as I hook up the extension set, fidgets with the feeding tube with his toes, and I feel a tiny twinge in my arm from holding up the bolus at the very end. The belly feels full, and the eyes get heavy, and inevitably, he scooches down and deepens the cuddle on his way to dreams. Albuterol and Pulmicort, followed by Pulmozyme. Fidgets, smiles, and forehead kisses. Sometimes quiet looks or one last protest against slumber. Always salty forehead kisses. Always a moment of hesitation as I tuck him in, always, always, the resonant grace in my heart as I see him sleeping.

I wouldn't choose the dependable, comforting moments of my life to be linked to CF, in itself unpredictable and destructive. I also wouldn't choose to often only have one of my children to tuck in. But every single night since Homozygous Delta F508 made it's presence known, I have held my son in the same way. The night routine elicits a Pavlovian response for the whole family. It's the benchmark of the end of the day, the signal that we've done all we will do in this turn of the sun. It's a small but powerful guarantee of contact and bonding with someone I love so very much. No matter what has failed me or hurt me during the day, there is, in that moment, an intense reciprocity of love.

I wonder how long I have that moment for. Eventually, he will outgrow being rocked by his mama. Eventually he will hold his own nebs, take his own pills, have a percussive vest that thumps his chest instead of my hands. Maybe eventually he'll take a pill that renders all those other treatments unnecessary. There is also the possibility that things would go another way, but we don't entertain that notion. He will grow, as children are wont to do, as mothers we want them to.

I don't usually feel the desire to stop the clock. I embrace each year on my driver's license, I believe wrinkles trump Botox every time, and I know that every moment survived in spite of our folly is a triumph of its own. The beauty of the moment is not only in its sweetness, but also in its fleeting nature. Take all you can from it, because it will be gone just as swiftly and as sure as it came.

Like so many other things, it's a little microcosm of life on the whole. I try to do better, to be better, I am often pleased, and often disappointed. And while I won't stop trying to be better than I am, in those few moments, it ceases to matter.