Friday, August 19, 2011

Vacation & the Return to Reality

2011-08-14 16.39.20Last week we hit a huge milestone- our first real family vacation. Of course, we have traveled together before, and we LOVE our trips to visit family, but this was our first time to go somewhere we knew nobody and be camera wielding tourists. I had been hanging my hat on this trip and worried something would happen to stop it for MONTHS. Nothing did. We made it! We escaped the daily grind, the hundred hour work weeks, custody schedules, bills, foundation problems, Doctor visits, meetings, plans, pains, stresses and conundrums and we went to the beach.

It was phenomenal. South Padre Island isn't like any other part of the Gulf Coast that I've seen. The water is the delicious aqua hue of a perfect piece of sea glass, and crystalline as it washes over your feet. The mist in the mornings is so thick you can taste the salt as you breathe it in. The sand glitters in the sun. I'm not romanticizing it, it was that good. I ran on the beach in the mornings (beach running is hard!), we built sand castles- J destroyed sand castles. Emily boogie boarded. We played in the waves. We chased tiny fish that skipped through the outgoing tides. We ate seafood. We visited the Sea Turtle Rescue Center, The UT Pan American Coastal Studies Center, took a dolphin watch cruise and got to handle sea slugs, rays, starfish, and more. We hunted shells and identified wildlife from birds to plants to crabs. Em and Mike had a fishing trip for the ages. And we were only there 3 days. 2011-08-15 11.23.49

Coming home was hard, for a variety of reasons. I had wished so hard for this carefree moment for my family. I had clung to the idea of escape and used it to get through tough times, and wasn't quite sure what to do when it was all over. And I LOVE the ocean. If I didn't have a binding custody agreement I would have moved my family to a coast long ago. It's hard to leave.

And even though we traveled with three extra bags just to handle our medical needs, it was a little vacation from CF, too. The night before we were to leave, CF made it's nasty self known. Not with Jackson, but in the form of hard news for a dear friend. Amberlyn has been my friend since just after Jackson's diagnosis. She was the first adult CFer I met online, and we keep in touch as much as we can. She's the kind of person I really want my kids to have as a role model. Instead of feeling sorry for the cards she's been dealt, she spends her time making the lives of others better in their own struggles. And I'll be damned if she doesn't just love J to pieces. In October of 2009, Amberlyn got a new pair of lungs and a second chance. Last week, she found out that she's battling rejection in those lungs. Her body recognizes that the transplanted organ is foreign, and it attacking as if they were the enemy. Her medical team is inundating her body with some heavy duty drugs to try to stop the progression. I've been thinking of her non-stop since I heard. Of her family and friends and loved ones, and her donor's family.
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Logically, I know that what's 'fair' in reality means nothing. There should be a cap on the amount of pain and bullshit one person has to deal with, but there's not. And I can't imagine what that's like first hand, but watching it happen to your loved ones sucks. It makes me feel so angry and helpless. It also reminds me not to be wasteful with what I have. I don't have a neat little way to tie my subjects together today. There's bitter and there's sweet. There's reality, and escape. It is what it is, and I'll keep doing my best to make the best of what I have and hoping against hope that the people I love can continue to do the same.

Friday, August 5, 2011

Consistency, Dependability, Routine

2011-08-05 17.39.32
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.