Forever

forever adv.
continually; persistently; for all time.
(- The Oxford American Dictionary of Current English)

“Time is the substance I am made of. Time is a river which sweeps me along, but I am the river; it is a tiger that devours me, but I am the tiger; it is a fire that consumes me, but I am the fire.”
(- Jorge Luis Borges)

It is said that the fundamental equations of physics all have no directionality in time. In other words, all theoretic interactions can proceed in the reverse direction without violating any physical laws. But in life, while we can reflect on past events and learn from them we cannot influence them. Therein lays one of life’s enduring quandaries: that, however irrationally, in our minds we can dwell in either side of the present.

Or we may see the whole—with its past, present, and future—as a shimmering gift.

This is the gift we gave to Henry and to his sisters before him. We are their bridge from one side of forever to the other, their safe and solid ground.

Fate has granted this family some uncommon lessons about home: what it is and what it means to have one, and what happens when you extend your arms as a warm place in which to truly belong. China will offer some sense of belonging too, but in an oblique way that to our children will almost certainly hurt to fully understand. It may be easy to see in this a lost side of time's continuum. We hope not. That's because in China, far from perfect, one finds a kind of graceful chaos but also, even today, an enviable measure of shared reverence for aesthetic beauty in austerity and, most deeply, for sacrifice, and sometimes these can be less evident on this side of the planet.

China's common images of blossoms and simple fronds on scrolls or cloth are emblems of an understanding and are minor decoratives only if considered superficially. Harmony and centeredness. Honor to oneself and family. To bend and not break. These are some of the ancient but enduring ideas into which our children were born, then in their ways separated in modern non sequitur. So we try to encourage them, gently, to keep China in their hearts, for when they piece their puzzles together from the past they will look for, however much they each decide to.

China is a distance so far away that the stars Henry and his sisters see at night are in a sense last night’s stars there. But time, forever, is the substance we are made of.

There are no fixed limits.
Time does not stand still.
Nothing endures,
Nothing is final.
You cannot lay hold
Of the end or the beginning.
He who is wise sees near and far
As the same.
(- Chuang Tzu)

A Rest and Recovery Period

It has been a while since we posted an update. That’s because we've been waiting for Henry’s bones to complete an adolescent growth cycle, now that he is a teenager. He had his 13th birthday this past fall and, as if on que, added several inches to his frame in just a few months.  He's still growing.

We’ve been working with a new team of orthodontists in preparation for fitting Henry with a temporary bridge that would for the first time give him a set of front teeth. Our longer term plan includes permanent implants once we have enough stable bone structure to build upon.

After that troublesome series of P-flap surgeries, Henry’s speech seems to have regressed a little, which may indicate further problems with his palette. Or it may just point to the need to really get to work on those teeth.  Still further ahead are the eventual need for reconstructive surgery for his nose and a lot of scar revision. We are hoping that he will be able to avoid another round of Midface Distraction Osteogenesis.  Otherwise, Henry continues to be his happy self and is hanging in there at school. In the fall he joined his middle school cross country team and, proudly, finished every race.

Meanwhile, it has also been a while since we mentioned our support for the organization Love Without Boundaries, these days through monthly sponsorship of a little boy with both a heart condition and Down syndrome. He lives at LWB’s Annui Healing Home for abandoned children with special medical needs. This kind of sponsorship is such an easy way to make a huge positive difference in a child’s future, and we highly recommend it. Alternately, there are lots of similar opportunities through other organizations working overseas or here in the United States.

Looking Back at a Lot of Surgeries

What a year that 2018.  In November Henry underwent yet another surgery and this time to repair the damage from the failed p-flap (pharyngeal flap) procedure that came undone late last summer.  Afterward we returned to the hospital several times for his doctors to carefully look him over, and just last week they were finally able to declare the repair a success.

Looking back, last year alone Henry underwent five surgeries in a 12-month span.

That seems like a lot in middle adolescence. The much larger number of times since he was a small child that Henry has needed surgery with a hospital stay and significant recovery time just shows how really hard it can be to fix a severe bilateral cleft lip and palate.

The special multi-stage procedures (Abby flap and Midface Distraction Osteogenesis) he had were especially hard.  Each came with a level of danger and prolonged intensity that far exceeded his other more routine surgeries. On the other hand, every repetitive round of general anesthesia has been at least a little worrisome on its own, especially the times when Henry had difficulty re-establishing his breathing or when he woke to frightening feelings of nausea while his mouth and throat were swollen with painful sutures.

Of special note in Henry's case is that to date about 60 percent of his surgeries have failed to some degree due to dehiscence or, in other words, due to sutures unraveling or stitched tissue tearing away.  It is entirely possible that surgical error could be a cause, although over time his surgeries have been performed by many different surgeons in three separate hospital settings. The condition of the tissue that his surgeons are working with may be another factor, since most of the areas addressed were at least partially homemade during previous surgeries.  And, from the beginning, the severity of this particular cleft has clearly been a challenge.

The good news is that we have reached a stage at which over the next couple of years our medical team will likely shift focus toward constructing a row of upper teeth, which will mostly involve orthodontia and maybe some lighter-grade oral surgery.  Meanwhile, we feel we can talk freely with our cranial-facial and plastic surgeons and are reasonably confident in their comparative expertise going forward.  However, our experiences over the past couple of years have made us less attached to the status quo.

It is hard to say how all this has really affected Henry.  He seems to accept hospitals and surgeries as things that for him are normal, although he understands that most other children have not had the same experiences. More often these days he prefers staying home to venturing out to new places.  On the other hand, he is very comfortable in familiar, favorite settings that can be crowded with strangers such as the zoo or the aquarium. He attends 6th grade at an urban public middle school that shares a building and busy campus with a high school (attended by his two sisters).  He still wakes up happy each day.

While all this can be a lot to handle, Henry handles it well and mostly through his natural tendency to happily live in the moment.