Gratitude is the Heart's Memory

The mechanics of speech are complicated, even mysterious. For example, say the simple word "cup" and you can feel, ever so slightly, a kind of involuntary closure near the back of your throat, a critical speech reflex that just seems to happen on its own. To speak well under the best circumstances requires a finely tuned concert of jaw and teeth along with a wonder of coordination among nerve signals from the brain and reflexes involving lips, tongue, palate, uvula, epiglottis, and the pharyngeal tube at the top of the throat where that aforementioned closure occurs. In all this we found an epiphany moment last week during a visit to the hospital, where our doctors were able to insert through Henry's nasal passages and into his vocal cavity a thin tube with a video camera at the end. In our push to explore every possible way to surgically prepare our little guy for his school years ahead we missed an important point our doctors had been trying to make in subtle ways over the past year or so.

There on the hospital video monitor we were given an interior view of exactly how Henry manages to speak with half of his speech apparatus handmade from stretched musculature, processed donor tissue, and repositioned skin and cartilage. Point taken.

From our network of other families of children with severe clefts, we often learn of additional reconstructive procedures that can address speech or physical appearance. When we've asked whether one or more of them might be good for Henry, our doctors lately have answered with the same somewhat frustrating response. "Well, we could try that if you really want us to," they've offered, as if we weren't looking to them for advice. Then they've uniformly followed with the more sensible, discouraging warning that any more surgery we try right now would use up valuable tissue needed for more extensive corrective procedures best planned later, after the bones in Henry's face are more fully grown. But last week, as we all stared at that video monitor, our primary surgeon added a quiet note to the usual refrain, one that finally sunk in. "Listen, folks, he's talking, not perfectly, but talking, which is very, very good," he said with the unmistakable tone of someone referring to an outcome that had been far from certain. "You have to consider where he started in this."

We understand more so now that in their work with Henry, so far, our surgeons and the others on our medical team have carefully woven a miracle.

When our girls were little they sometimes spoke of piggy "binks" and Zulu "cloconuts." Now the same age, Henry takes his own unique angle toward almost all of his words, skipping the consonants from nearly every first syllable for example, because for now he has to. But we suspect that someday we'll smile in warm memory of this too, since he's so exuberant in his effort and is making such obvious although difficult headway.

Meanwhile, Henry passed his readiness test and is officially set to enter kindergarten in August.

A very sincere thank you to those who pitched in to support physical therapy at the Pingliang orphanage after our latest call for contributions through Love Without Boundaries. It's a small world after all. We were able to raise the funds needed for the orphanage to send the additional staff members to an intensive physical therapy training program (see previous post). They left for Chongqing in October and will have returned home in time for Chinese New Year, bringing the number of staff formally trained in physical therapy at the orphanage to four. Some of you made general donations as well. LWB's other established, ongoing programs at the Pingliang CWI include a nutrition program and an aunties program, both supported by monthly sponsorships but always welcoming additional help. The nutrition program sends high quality formula and cereal with nutritional supplements to the orphanage and through on-site visits monitors the use of these supplies among about a dozen infants there. The aunties program provides the orphanage with extra caregivers, hired part-time from the surrounding community.

The music with this post is a piece titled Cherry Blossoms and is performed by Jia Peng Fang.