Wednesday, February 29, 2012

Frighty Fer Contemplates a Leap

It's Leap Day, so we're going to discuss leaping!  Unless you have a child prone to leaping off the roof, you ought to run out and buy Mélanie Watt's children's book, Scaredy Squirrel.  Grab a copy even if you don't have kids at all, because it will crack you up and remind you not to get too comfortable or fearful or change-repellent. 

Scaredy Squirrel is  paralyzed by fear of what lies beyond his familiar tree-world (for example, germs, tarantulas, sharks, and Green Martians), so he rarely ventures forth, with a routine typified by "Wake up. Eat a nut. Look at view. Eat a nut. Look at view. Eat a nut. Look at view. Go to Sleep." He keeps his emergency kit, stocked with sardines, bug spray, a hard hat, and parachute, close by.  He formulates an emergency plan with the following steps:  "Panic.  Run.  Get kit.  Put on kit.  Consult Exit Plan.  Exit tree (if there is absolutely, definitely, truly no other option)." 

It's easy to relate to Scaredy Squirrel and his longing for sameness, safety, and simplicity. As a family we can appreciate the comfortable predictability of Wake up. Make lunches. Eat oatmeal. Get dressed. Go to school and work. Come home. Make dinner. Eat Dinner. Do homework. Engage bedtime routine. Go to sleep. Throw in a few piano lessons, squabbles, dinners out or with friends, playdates, meetings, colds or allergies, and family outings, and we've got just about as much adventure as we can handle most of the time. Our life insurance policies and some extra flashlights and water bottles squirreled away in our dilapidated garage provide an additional sense of security. 

The more we maintain routine, though, the more the notion of Unexpected Occurrences keeps me awake at night.  Not taking risks can feel like a habit that needs breaking.  

Tonight I listened to author Dave Eggers speak at a local college's Writers' Symposium, and he touched on our human fear of the unknown.  He referred to What is the What, an autobiography/novel he wrote with Sudanese Lost Boy Valentino Achak Deng, and the legend of the "what."  According to Dinka creation myth, God created men and women and then offered them material sustenance in the form of cattle or the vague promise of "the what," or, what God has in store.  The Dinka chose cattle, and with it all the ramifications of reliance on tangible "knowns," including drought and famine.  The Dinka come to regret their reluctance to opt for the "what," which afforded other tribes the gifts of ingenuity, invention, and resourcefulness. Like Pandora's box and the forbidden fruit, the "what" represents human passion and possibilities: the good, bad, and ugly.

But the unknowns are scary, and they drive us to prefer even unsavory knowns.  Eggers went on to describe a scene from his novel You Shall Know Our Velocity, in which one of the main characters, on a global journey with a friend, recalls his anxiety in the still quiet atop the Atlas Mountains as compared with how he felt running through the dangerous alleys below: 
You know, though, the worst thing was being on top of that mountain, and having the thought that I wanted to be back below, being chased through those streets...while up on that mountain listening to nothing, waiting and hearing nothing, and getting cold, I wanted to be back down in those alleys. I wanted something to happen so my choices would be fewer, so my map would have a route straight through, in red. I wanted limitations, boundaries, to ease the burden, because the agony, Jack, when we were up there in the dark, was in the silence! All I ever wanted was to know what to do.
Eggers recognizes a human preference for the daily struggle over confrontation with the big questions.  We add to our emergency kits, practice playing dead, worry about what we know we should worry about, and focus on keeping our tree-worlds safe and predictable.  When a possible change doesn't come to fruition, I can even find myself exulting in the relief of choices being fewer.

Last summer, we stood by in admiration and bit of mourning when my brother and his wife and four children moved out of our neighborhood and to the US Virgin Islands for a new job and lifestyle.  These days I often feel like a distant relative of the young woman who up and moved to Africa to teach for year.  But it's Leap Year, and it's time to consider some change.

Scaredy Squirrel, like my brother, finds reason to jump from his familiar abode in the climax of our book.  Scaredy is without his emergency kit and fails to enact crucial components of his emergency plan.  Nevertheless, it's that unexpected plunge from his faithful nut tree which allows him to discover that he is...a FLYING SQUIRREL!  Still he finds it necessary to play dead for a good two hours afterwards to let his new reality sink in.  It turns out even good, exciting change can be stunning. 

In the end, Scaredy Squirrel's routine is revised to include a daily "jump into the unknown." 

So this is my Leap Year resolution: to embrace the plunge, icy and breathtaking and terrifying as it may be.

How will you leap this year?

Monday, February 20, 2012

On the Wane


A crescent moon, I cradle your shadow-body:  
soft, dark, deep slumbering.
You were tiny once, and I eclipsed you
In a tentative smothering and little sleep.
This phase, also, will pass--
Hair commingled, our thoughts closer than ever
Chests swelling and deflating in a round.
You'll be too restless soon
for staring skyward and whispering

As we watch the moon
Glowing, swelling,
And new.

Sunday, February 12, 2012

I Wish You Could Smell This

The jasmine growing in our yard is blooming in abundance and the scent of flowers follows us.  I had to bring some of that olfactory awesomeness indoors. 

Mmmmmm:  nature doing all the work.  I love that. 

Sunday, February 5, 2012

Ain't Nuttin' but a Tube Thang, G

There's the life you lead when you have healthy children, the life you lead when your children don't have special needs: you feed them stuff; you worry about general safety; you take them to routine appointments and weather the occasional blip on the screen.  And there's the life you lead when you don't take health for granted, when part of daily maintenance is providing nourishment through your son's feeding tube.  This week is Feeding Tube Awareness Week, and this post is in honor of my nephews and their mom and dad, who live their unexpected life with aplomb. 

Perhaps you've thought about feeding tubes.  Many of us did during the extensive media surrounding Terri Schiavo and the court's decision to support removal of her tube.  The feeding tube played a prominent role in my grandmother's and mother-in-law's post-stroke condition and prognosis.  We are more likely to associate feeding tubes with end-of-life narratives, less likely with beginning-of-life or daily-life scenarios of small children.

My nephews' tubes are hardly the most interesting things about them, but awareness week reminds us how important it is for questions to be answered and for curiosity to be satisfied, so those other belly "buttons" to the left of the ones they were born with don't distract too much from getting to know who the brothers truly are. 

Jack and Charlie were born with a suspected mitochondrial disease.  When mitochondria, the "powerhouses" of the cell, don't function properly, energy production to muscles and organs is affected.  In Jack's case early on, this presented like reflux, but it's clear now that a neuromuscular issue is affecting the boys' gastrointestinal systems, making swallowing, digesting, and moving the bowels difficult to nearly impossible. 

Normal eating and drinking poses the risk of aspiration and infection; hence the insertion of both boys' feeding tubes (the gastric tube is inserted into the stomach, and the jejunostomy into the intestines; Jack has a g-tube and Charlie has both g- and j-tubes).  Charlie receives all nutrition through his tubes.  Because of serious motility issues in his stomach and intestines, Charlie is on what is called a "continuous feed" (18-20 hours per day) to help his body manage volume and absorb nutrients comfortably.  He carries a backpack with his feeding bag inside for much of the day.  But he runs, jumps, and plays like the happy, active toddler he is. 

Jack eats and drinks at meals like his parents, but his g-tube button remains at the ready, anticipating the likely progressive nature of his and his brothers' condition. 

My sister and her husband and sons have meals together as a family, because, as my sister explains, "meal time is about more than food; it is about being together."  But mealtimes are challenging. Charlie can't eat more than the occasional "puffs," so he pretends, with his own plate and fork and spoon.  Or he sucks on a lollipop.  Sometimes he plays on an iPod to distract him from begging for crumbs. Because Charlie isn't not hungry; Charlie wants to put food in his mouth.  Rather than pity him, though, my sister and her husband are matter-of-fact about his reality, and avoid restaurants.

Feeding tubes mean cleaning the stoma, or "button," daily to stave off infection. There's venting and leaking and flushing to manage as well, and fashioning jammies with a hole for the tube to feed through (my sister sews these for other children, too!). There are lots of appointments, and urgent care visits when a virus strikes. And suppositories. Also those.

But life, otherwise, is as normal as can be, with preschool and rambunctiousness and tricycles and tantrums. Taking one day at a time, there's no dwelling on what it will be like or feel like to be a grade-schooler, tween, and teen who doesn't drink juice boxes and have burgers with friends. But the boys will have role models, and reminders that, ultimately, we eat to do, and we eat to be...which is far more important than a plate of fries and milkshake.

Do my nephews a favor this week, though, and don't take that tall glass of water for granted.