My son is having a rough time of it, again. But there are moments when serenity spreads her wings; his face is relaxed, a small but potent smile comes on and his eyes sparkle like a kid seeing Disneyworld for the first time. I find, for lack of a better word, a sense of grace in these moments of reprieve from his increasingly frequent discomfort. They are even as predictable as they are significant because finally there is something concrete and positive that comes by way of my own hands as I work to massage his back in preparation, then work harder still but with delicate precision, to decompress his spine and see him relax completely.
Though Segev's treatments takes me to my
limits and beyond, it is the experience of nearly twenty five years of giving treatments, numbering
in the tens of thousands, that have helped prepare me for this task, of adapting
postures and techniques that fit my son’s unique needs. I feel my way through the tortuous landscape
of his misshapen spine, the contortion pressing on nerves to such an extent
that even food traveling through a particular section of his bowels presses on
the displaced nerves and causes him to scream in agony. Despite several pain
medications, multiple times a day, these paroxysms of pain have never been fully
controlled and have gone from being a rarity of occasional clusters at non-decipherable
intervals to frequent, daily episodes.
At the same time the health of
his lungs remains a tremendous concern with pneumonia always a stone’s throw
away. Multiple daily sessions of chest physiotherapy, nebulizer use and the
spinal decompression have helped to keep him in reasonable shape since we came
out of the four and a half month long bout of pneumonia at the end of April, this year. His
last episode was three weeks ago and in contrast to the previous twelve years
of lung infections, the degree to which he was conscious was much improved. It’s
hard to understand that part; why he can be completely unconscious for up to
eight days at a time, completely limp and unresponsive to any stimulus.
I like to think that he has
survived these dozens of cases through the combination of tending to him in unrelenting
fashion, administering through the days of night and the nights of day, attention
to detail, Love and his own inborn, remarkable strength. But I don’t know to what degree luck hasn’t played a significant role as well; whether mistakes made in
the past can be considered cancelled out, by propitious, timely decisions.
Remarkably his oxygen levels have
improved over the last two months. While he still requires supplementation
twenty four hours a day, the numbers are quite good. Then the caveat: whenever
he does sleep for more than two hours there is about a twenty percent
occurrence of his left lung closing completely, (though it is collapsed it
still allows for some incoming and outgoing air) it requires vigorous chest
compressions, ventilation with an ambo-bag and no small amount of panic as his
oxygen dips to 60% or even lower. The times when he sleeps and the monitor’s alarm
starts its horrid noise, flashing red as it shows a rapid descent in oxygen saturation
and Segev calmly remains ‘sleeping’, breathing less and less as the central
apnea takes hold, until thumping on his chest gets him breathing again, are
unlike the issue of complete closure of his left lung. That is accompanied by
severe thrashing and heaving, as he fights for breath, tries to cry out in pain
but is nearly mute throughout the contortions.
Few of Segev’s four or five
different seizure types hold to any kind of pattern. Since starting the medical
cannabis and its derivative CBD, he has moments where he tracks objects with
his eyes, is more lively, disturbed by switching on a light to the point where
it initiates a seizure, also developing a startle reflex to very particular
sounds yet in general having far fewer seizures each day. He has gone from up to a hundred down to
about thirty per twenty four hours. The external manifestation of the seizures
has changed dramatically. The severity of some is different, there are new
types of movement. Some attacks go on for less time than before, some longer,
some now repeating in clusters that will only end with the administration of
diazepam (valium). And so it was now, just now as I was writing this piece,
barely five minutes ago.
To continue; why now? I mean, why
write about it now, yet another time? Yes, new elements come and go, old
patterns from years past reestablish themselves so that, in one form or another
we have seen it all, gone through every minute detail, lived it, clenched fists,
wailing, raging, whimpering; all done before. But still surprised; by his
tenacity, withered by the endlessness of it, delighted, by the endlessness of
it.
Because not only have I grown
weaker, (though, I believe, wiser) but so has he. The changes to his veins,
darker and more prominent, bodes ill. While his sleep is constantly interrupted
by either seizures, or the need to expel the ever-present phlegm, repositioning
his paralytic body or the tense moments of pain, he is only conscious for a few
minutes here and there. Together the time that he is awake amounts to no more
than a few hours. It’s good that he rests so much, I’m certain that with all he
goes through, he needs it. But that is the point, he needs it. He can only
muster so much and with time, he is present less.
I’ve had to take a long hard look
in the mirror. The kind of stare down where you put yourself in a tough place,
where tough decisions are made. I don’t want to make those tough decisions
again, don’t want to think about them but I would be deluding myself if I
thought otherwise than that the most difficult experiences still lie before us.
Things will be different. Hopefully my views will have evolved to allow me a
better perspective and Segev will evolve as well, into a different Segev, moving
through the stages as only he can.
Despite the morose state of
things (or of my mind) each and every day is appreciated. Each day I remind
myself that it could be worse. I truly believe that. When I am able to nap for
an hour or two while my son is with his mother, I feel like a different person,
clear headed (well sort of), with energy to spare (at least for a bit) and then
the feeling of reward for having Segev is that much stronger and tangible. My
kingdom for some sleep, I sometimes whimper. Just let me sleep a bit. Driven
mad by lack of sleep; not a pretty picture at all.
Magic hands, magic hearts....a testament to resiliency!!!!
ReplyDeleteMay those flashes of serenity sustain you.
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