Good writing, with a strong point and with life oozing out.

Variegated Grace

August 30, 2006

At the three hour mark of an episode of continual fussing and crying from The Boy today, I actually paused to construct a list of ‘reasons why I shouldn’t punch a #2 Phillips head screwdriver through both of my eardrums’. After several minutes’ work, and with only two decent reasons (BT’s groundbreaking new album, and how I’d miss the sound of the electric brake on a DeWalt miter saw), I gave up the project.

The level of travail has risen in the house of late, with the developmental progression of our son. One would expect sheer celebration as our son reaches anticipated milestones. Instead, we are lamenting the departure of several of Will’s newborn reflexes. These losses are normal and expected, but we miss them dearly and the graces that they bestowed upon Will’s mealtime.

The first: the swallow reflex, where a baby with some liquid in his mouth will more-or-less automatically swallow it. This handy reflex is also useful whereby a baby can be caused to swallow by a puff of air to the face. So, if the kid is kind of throwing up, or if you’re trying to pass a tube from his nose to his stomach, you can just blow in his face and see the problem resolve, as the swallow reflexively engages.

The second is sorely missed: the suck reflex, whereby a child will naturally draw on anything that is introduced to his mouth, providing soothing comfort as well as a means of nutrition. Of course, with his cleft palate and lip, Will has never had a truly effective negative-pressure suck, but he’s used his jaw, tongue, throat and lips to roughly approximate the motion, and so has been somewhat successful in comforting himself in addition to cuing his parents as to when to give him a bit of milk as his entire mouth cups and caresses the teat of his special bottle.

Finally, the rooting reflex is that nifty maneuver where a touch to the cheek or the corner of the mouth will elicit an opening of the mouth and perhaps a turn of the head toward the nipple. We miss this one because it provided the only indication (though just barely reliable) that he might be interested in taking in the nipple without gagging and throwing up. Apparently, it only seemed voluntary for him to open his mouth for a meal, as without it, it becomes difficult to introduce the bottle into Will’s mouth without gentle force.

Isn’t it interesting that there exists a tradition of praying before a meal—we call it ‘grace’—to express appreciation for the food we’re about to eat. When in actuality, we might better pray when we don’t have food, or are unable to eat, since that is when we’re truly thankful; truly aware of the grace we’ve been given. We often don’t appreciate benevolence until after the fact. Or until that generousity is no longer keenly apparent.

So over the last week, we have entered a new frontier of stressful and dangerous mealtimes which leave our nerves jangled and our interactions curt. And that’s just for mom and dad. Will is confounded and upset too, as his old comforts and successes are now challenging and confusing. The underlying impulses are periodically there, but the coordination of them seems almost completely gone. He might suckle, but not swallow—the milk just moves around in his mouth until it dribbles back out and down his chin. Or until he chokes on it. On another occasion, he might be swallowing in big strides, but he’s not able to coordinate his jaw and lips. Or he might just clamp his jaws tight, and stare us down with what can’t possibly be utter defiance. Most frequently, though, we never even get off the ground: left to guess as to his readiness, we’re frequently introducing the nipple and getting hugely aversive responses, followed by inconsolable wailing. In fact, on one heartbreaking occasion, the mere sight of the bottle induced a full minute of continuous red-faced retching and gagging.

Paired with these losses is a mysterious increase in strength and energy. We used to pray for more endurance for his feeding efforts. We got our answer in a heartbreaking mishmash: he hasn’t the coordination to eat, but has just enough energy to fuss and fight and whimper and cry much, much more than he ever has before. He’ll wake up hollering in the night, or he’ll fuss for long periods during the day. He’s unable to be comforted when held, and yet cries from his bed or chair, too. We approach mealtimes with a ramshackle hopefulness and a thin bravado, knowing that these sessions usually end in bitter defeat. Gone are the days where he would expend his energy in exhausting gustatory effort, sleep soundly, then wake up hungry for more. Gone are the days where he might pitch a fit, but wear himself out after twenty minutes. Now, he’s puttering his energy away all day all night with no apparent payoff or respite. Without his old rhythm of energy expenditure and restive replenishment, he’s strung out and fitful. We’re all strung out and fitful.

And yet, grace prevails where hope fades: while I was writing this, he swallowed down a full 80 ml by mouth (blasting by his old personal record of 65). Go figure.

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4 Responses to “Variegated Grace”

  1. Mike Croghan says:

    I just read your earlier posts, and looked at the picture up at the top. You’re right, that smile and that hair would melt the hardest hearts. Take care of yourselves too!

  2. says:

    mike & stacy

    My heart goes out to you especially at this time. and WILL must be terribly confused and frustrated—-GOD will help you work past this difficult time!

    Iowa Dad

  3. says:

    mike & stacy

    My heart goes out to you especially at this time. and WILL must be terribly confused and frustrated—-GOD will help you work past this difficult time!

    Iowa Dad

  4. says:

    Mike and Stacy;
    just catching up with your blog this a.m.and now know why..we are/will continually be praying for WILL and all of you as you seek GOD for all that HE has for you today.
    Uncle Chuck and Aunt Sara

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