As the memorial eve of Tracy Latimer’s death approaches (October 24th)
I find that I still feel sadness for her passing and am drawn once again into the
realm of existential angst. For those who are not familiar with the case, Robert
Latimer, her father, was convicted of murdering his 13 year old severely disabled
daughter by asphyxiation.
He maintains that this was a ‘mercy killing’, that his
daughter’s life was primarily defined by her suffering and that the immediate
future would be even worse as the medical intervention recommended to alleviate
some of her physical pain would, in and of itself, cause severe pain during the
lengthy recovery period. He made his decision to give her rest, or, as one
popular culture writer put it in such coarse and grisly term, “The long, hard
I published this June 28, 2011. Some things remain the same.
son is not normal. Far from it. As a matter of fact he is so far from
normal that there are few words which can describe him. Nevertheless I
try. I want to find the words which can describe such an odd existence
of twitches of muscle that build to crescendo and crash like the waves
breaking on the shore. And the quiet after the storm of each major
seizure. The endless surge of hundreds of thousands of seizures.
Segev is once again on antibiotics, he has pneumonia. His last episode was just one and a half months ago, but he is responding well. The side effects for my son have been so severe in the past that it has influenced my decision, whether to start with the medication or tough it out, as we have done so, so often, using instead a combination of abundant and intense chest physio sessions, nebulizer therapy and herbal medicine.
As a child, you could say I was a bit superstitious. When eight, walking along the sidewalk to school I would always make certain I didn't step on any ants because I thought that it could bring bad karma. I've changed my views about these kinds of things in the last forty years but one kind of superstition turns out to be real and displays a tenacity which is dumbfounding.
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
My daughter is coming home. At age eighteen (having finished secondary school with high marks) she was due for her army service, but since it is possible to postpone the induction by a year through a special program that allows one to gather experience, often in the form of volunteering to help the community. She chose to work as a ranger in the nature reserve at Ein Gedi which is located on the shores of the dead sea.
Over the last year my experiences
have shifted me slightly in regards to children with severe disabilities (in
that social paradise, The Netherlands, such children are referred to using both the
unwieldy, though not flamboyant, term, ‘Severe multi complex disabled children’
as well as the antiquated, Easter island monolith of, ‘handicapped’) towards
what I would assume to be, are the outer fringes. It seems I may be one of few,
to freely use the word ‘extreme disability’ to describe the condition of my son
and similar children.
I may not be practical in all
matters, but I do know what I feel. The
stories on these pages, of my son Segev’s life, are often filled with quixotic
statements in an attempt to entice calm in the face of the storm and paint a
picture of romantic propitiatory yearnings, as though we are not truly blessed
by his existence.
Today is a milestone of epic
proportions, though I find myself reticent in celebrating the moment, as these
last months have been quite hard on us all while Segev still remains with pneumonia, already since early December.