The
child does not exist who, between the ages of 2 and 5, does not display a
predilection for poetry.
I
stumbled across this quotation yesterday in a notebook I'd kept a few years ago
-- copied from a text by the Russian writer, Kornei Chukovsky.
It
seems apt, because just this week Asa's started rhyming.
We
were sitting on a sofa in our hotel in Birmingham on the night before his last
medical exam when, à propos nothing, he came out with two words that rhymed.
"What
about, head and bed?" I asked in response.
"What
about, light and tight?" he rejoined.
We
kept the game going for a while. And since then it's become a regular way of
passing time.
The
fact that children should invent (or discover) poetry as a matter of course, as
they learn to speak, is amazing to me.
Of
course, Asa's been exposed to rhymes -- in books like You Are My I Love You, and in songs.
But
how readily he makes the idea his own!
And
this is really part of a whole bundle of discoveries that children make around his age -- including
music, dance, symbols and patterns.
For
Selam and me, interest in these aspects of Asa's development is heightened by
the fact that his vision remains problematic.
Perhaps
we shouldn't be so concerned. Deaf children start to sign at around the same
age as hearing children start to babble: Even with a sensory disability, there
are certain important developmental processes that seem just to unfold anyway.
But
so much of our experience of
the world depends on sight, that we wonder what aspects of Asa's development
might be set back, and we try to think of things we might do to make up for it.
Latest
ups and downs
The
past few months we've been through some ups and downs. (When hasn't that been
the case?)
Two
months ago, at one of his regular exams under anaesthetic in Birmingham, the
doctors noted some tumour growth very close to the ciliary body -- a
part of the eye where there's a lot of blood flow in and out. If tumours are
active in this region of the eye, it's dangerous, because it means that cancer
could spread through the bloodstream and take root elsewhere in the body.
During
the following weeks I corresponded with doctors in the US, Canada, and
Switzerland -- those we'd called upon at the last fork in the road, when
radiotherapy had been recommended -- to get their opinions on what to do. The doctors in Birmingham had
agreed that in a case like this (Asa is now among the perhaps 1% of retinoblastoma
patients who do not respond
to chemotherapy) it made sense to get a range of opinions.
It
was a great relief when, at the following exam, the tumours near the ciliary
body turned out to have responded well to local treatment. For the time
being at least, radiotherapy is off the table again.
But
we can't rest too easy. Last Friday Asa had his 22nd exam under anaesthetic, and although things are
relatively stable, he's still never had a single exam at which new tumour
growth of some kind or another hasn't been visible.
These
are phenomenally active tumours, and if they weren't kept in check they'd
doubtless be fatal.
Counting
time
Asa’s
disease, a cancer of the retina, affects children almost exclusively, and is
most active during the part of the lifecourse when the eye does most of its developing --
from birth to five years old.
After five, the chances of new tumour growth declines dramatically. And the closer you get to
five, the lower those chances get too.
In two weeks time, Asa will turn three.
So each
month without a major relapse is a victory.
Each
month that he sees is something to celebrate.
And
in each day, there’s poetry.
