One morning recently, when we
were trying to get Asa to put on his socks, he asked us, seemingly out of
nowhere: “What does it have in it, my
right eye?”
It was clear he wasn’t in
discomfort; it wasn’t that he had a piece of grit in there. He pointed up at
his eye with his index finger.
“Well, it’s got jelly in it,” I said. “And a retina, and a lens. And lots of other things we didn’t know about two years ago.”
“And what does it have in it,
my left eye? Does it have a lens?”
“No, your left eye doesn’t have a lens.”
“What
happened to it, the lens?”
“The
doctor took it out, because the eye was poorly.”
“Was the lens poorly?”
“It had gotten --”
“Cloudy,” Selam offered.
“Yes, it had gotten all cloudy, and you couldn't see well through it. So he
took it out.”
“Who took it out?”
“The doctor took it out.”
“It doesn’t have any lens.”
“No. That’s why you have to wear glasses sometimes, so you can see better. And
that’s why Mummy patches your right eye sometimes. Because we want you to see
as well as you possibly can.”
Asa with patch and spectacles |
That
was about as complete a discussion as we’ve had with him about this topic. We’d
been prepared for it, in part, by advice from the play therapists at Birmingham
Children’s Hospital, and a children’s book that they put together, which
we’ve been reading at bedtime.
from 'When I come to Birmingham Children's Hospital' |
But
Asa’s questions went far beyond the content of the book, and drew on
conversations that he’s overheard us having with doctors, and among ourselves.
He
clearly understands more of what’s been going on around him than we’d
assumed. And now, at
three-and-a-half, he’s getting articulate enough to feed some of it back to us.
Soon
he’ll doubtless have other questions: Why are the tumours there? and When will they stop growing?
How should we respond to questions like these, when nobody knows the answers?
The point at issue
Two
months ago, one of Asa’s routine exams showed that the tumours in his right eye
had relapsed. After a couple of blissful months when the tumours were relatively quiescent
and the interval between check-ups had lengthened to four weeks, we went back
to a schedule of three-weekly examinations.
At
each of the subsequent exams, there have been signs of continuing tumour
activity.
Tomorrow we travel to Birmingham once again, ahead of an examination under
anaesthetic on Friday morning.
We
pray for good news. And for guidance in answering Asa’s questions as best we
can.
No easy answers for a wonderful curious boy. I had several heart surgeries and was tremendously thankful that in spite of being limited in sports activities, I was born with good hearing, vision, lungs, etc. I'm so glad neither Asa nor myself suffers diabetes, nut allergies or worse. I'm sorry that isn't much in the way of a supportive answer, but we pray Asa's eyes heal completely and the tumours eventually disappear.
ReplyDeleteWhen I wondered the need to cut open my chest, I was told my leaky heart valves needed to be patched. I'm so glad London and Birmingham have the best specialists for Asa, just as UAB had the best pediatric cardiologists for me. Cheers, Have a pleasant weekend!
Thanks, Johnny. I'd be interested to know whether that answer about the leaky valves satisfied you as a child, if you can remember. We're certainly grateful for the excellent care Asa's gotten in London & B'ham -- and for the care you've received in (the other) B'ham, and in California.
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