A lot of Aine’s disabilities are obvious. She has a splint on her leg. Her right hand hangs limply. She uses a wheelchair. When she walks she has a very awkward gait. She talks to, hugs and kisses everyone. She has meltdowns. She has seizures.
She is also visually impaired. She wears glasses, but so do I. You wouldn’t necessarily know that that, in itself, is a disability. Today we had an appointment at the eye clinic. Aine was born with cataracts. This was picked up at her new born check; the paediatrician couldn’t see a red reflex when she checked her eyes. When she was four days old we saw a lovely doctor who confirmed cataracts. Here we met the lovely nurse specialist who has been with us since that moment on. Thank heavens for her. Anyway, age 4 weeks old, Aine had surgery to ‘remove’ the cataracts, and her natural lens, and she was fitted with contact lenses. This was followed by a traumatic few weeks when we had to give her eye drops several times a day. We set phone alarms to remind us. When I hear that sound now I still jump up!!! She has a lifetime of glaucoma risk so requires yearly pressure checks. That was today’s visit.
I’ll be honest, as lovely as the staff are, I’ve always hated this appointment. Aine gets upset, she is totally freaked out by the equipment. It’s not nice, I think most people are icky about eyes. Her worst behaviours come to the fore. Today I was bitten, scratched and kicked by a child that I know loves me and trusts me to look after her. That’s nothing different to any other appointment we’ve had since she grew past being a swaddled baby. But it’s essential. She has poor vision in one eye. We need to protect the one that’s doing all the work.
So it was decided. The next time she has it done, it will be under general anaesthetic. It has to be done. It’s the only way. We don’t like it, but it is what it is. She left happy. She blew her consultant a kiss, told her to put it in her pocket for later. She gave her nurse a huge hug and a kiss. I left happy that they saw the lovely girl in my life, not the fighty one!
We came home, had cake, played with fake snow and put our jimjams on early doors. For her, it’s all forgotten. Thank heavens for fake snow!