Wednesday, 4 December 2013

Let's hear it for the Mums.

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.


  1. Hi Sinead. I hope the operation went well. As a 'fellow' (is there a female version of that word?!) mum, you have my understanding. Claire.

    1. Hello, Claire, thanks for that. As it turned out, the staff at the hospital were amazing and patient, and made my young man feel very safe. Keep smiling and fighting the good fight.