I’m very distracted today, struggling to concentrate on
anything that requires actual thought.
Good news : that means a load of cleaning got done. I find
the smell of bleach very reassuring.
The distraction is pre-op stress. The operation won’t be
mine. The stress is.
(At this point I did just get up, cross the room, then
return with no idea why …)
Beloved Aspie (BA) is profoundly deaf. He wasn’t born that
way. He developed a growth in his ear at the age of 14 that destroyed the
insides. He never once complained of pain, which is why it did as much damage
as it did. It is a strange Apsie thing, that he had no relationship with his
inner body. He has a very high pain threshold, and at the time, no vocabulary for
or sensitivity to pain. He had never said he was hungry, or thirsty, and I hadn’t
noticed, because being Mum, I just tended to feed him at the right times.
The NHS surgeons saved his life. The growth had been heading
for his brain.
He was left deaf on one side, with chronic ear disease,
which at its worst amounted to two attacks a month and all the ensuing
antibiotics. At least we were assured it wouldn’t happen again.
Really? Approaching his 21st birthday, I noticed
a distinct deterioration in his overall hearing. A check- up revealed another
growth in the other ear. Surgery ensued and most of the rest of his hearing was
lost.
He has had the support of great doctors who recommended
bone-anchored hearing aids. They operate by vibrating through the skull bone,
bypassing the loss in the inner ear. Brilliant – so long as you don’t focus on
the fact that this entails drilling into his skull, screwing in a titanium
bolt, then waiting 3 months for bone and screw to meld so the hearing aid can
be clipped on to the outside. The process is scary, but the results are
amazing.
A bonus, when little kids stare at the small boxes at the
sides of his head, I like to whisper, “he’s not a real boy/man.” BA has denied
me the ultimate fun of following him with a remote control steering device...
The main problem tomorrow, as usual, is that on top of it
all, BA is needle phobic. They have to sedate him to sedate him. Every time, there is an argument with the anaesthetist
because the drug they use would last longer in any of us. But BA’s massive adrenaline
means he ‘digests’ it in a third of the time. They never believe me. This has
led to some very unfunny moments of him waking up as they wheel him into
theatre – and boy, is he loud when he’s scared.
So, maybe think of me tomorrow as I go into battle.
And think of all those other amazing mums who do so every
day. (No disregard to the Dads, Mums just carry the pain differently).
Actually, I’m not so much stressed as sad – that BA has to
keep going through this. He’ll be 25 next week – that’s over 10 years of
chronic ear disease and regular surgery.
I know that people live with a lot worse – you have my deepest respect. I
just wish our kids didn’t have to hurt.