Discovering poetry

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.