This is a post about guilt, mostly. It’s about my poor middle girl who can’t hear properly, and about how we’re nearly at the end of the process of getting her to be able to hear properly. It’s about failing a small child in countless small ways.
Catherine arrived quietly one afternoon in early autumn. I have wondered, so many times since, if I should have known from the start that she was in a world of silence.
Her birth was the one I expected first time around – manageable, controllable, exhilarating. I breathed her out on my own terms without being tethered to machines and drips. My husband and I saw her before anyone else did – she was passed to us as she arrived, with her brown button eyes open and expectant and seemingly entirely full of recognition. I knew this baby, I was expecting this baby. But she didn’t make any noise.
The midwife was waiting for her cry – needed to hear evidence of new air in new lungs, a fresh throatful of heavy hospital atmosphere. I remember telling her that this baby didn’t need to cry – that she was happy, she knew she was here with us, she was just choosing her moment.
I was right about that. She did of course eventually give a declamatory squawk, though more a statement of intent than a cry. But she was a quiet baby. She never howled or raged or roared. There was no fury, no flailing limbs, no head like a boiled ham from extended temper tantrums. Instead, she clung to me like a baby koala. Her hands clamped onto my flesh or clutched at fistfuls of my hair. She nuzzled and snuffled and kneaded and gorged herself on my milk. If she hadn’t been so familiar to me, I would have thought of her as an animal. She seemed to work on pure instinct.
But she failed her newborn hearing test. Ears full of gunk (that’s a thing, childless readers – yet another delight in the non-stop shitstorm of baby grossness). And then she failed the follow-up test. They had to attach electrodes to measure whether her brain was responding to sounds, because her ears weren’t. And when she passed that test, the nurse told us that there was no reason to think it would be an indication of future hearing difficulties.
But guess what?
As she turned one, and didn’t really make any sounds, and hated being sung to or read to, I pushed and pushed for hearing tests. I knew. And the NHS came through for us, and we got our appointment, and she was taken into the JR in Oxford for extensive hearing tests. And she passed. It was determined that she could hear, but when electrical impulses were sent down her ear canals, they were found to be chock-full of fluid. So everything she hears is coming to her through a wall of water.
Watch and wait, they advised us. Come back in six months. But before that six months was up, we moved countries, back to Ireland.
We were in a new system, a system involving insurance and insurmountable waiting lists and public health nurses and sixty quid a pop for doctor visits. I did everything right, I thought. I declared her pre-existing condition, meaning she was ineligible for skipping the public waiting lists through private insurance. I went to a private audiologist for a quick diagnosis, was told she knew someone in the hospital who could bump my Catherine up the list. I negotiated the fiasco of the referral system, with her form sent to the wrong department and weeks being lost while I phoned around to track it down.
This was last year. We’re still waiting for an initial assessment from the public hospital. I ring regularly to check on her progress up the list. She may or may not be seen before this Christmas. Then it’s back to the bottom of another list, for any surgery that might be needed. Another year, two years?
Meanwhile, my girl is speaking her own language. It took her a long time to speak to anyone – it’s like she knows it’s not quite right. Her speech sounds thick and muffled. Many of her words sound exactly the same, so we need to rely on context for a translation. No one outside of her direct family understands her, and she knows that. She has a little embarrassed laugh that she makes when we ask her to repeat herself. “Wuh deddy” she says. Whoops-a-daisy.
She is not a quiet child. She shrieks with laughter. She regularly roars like a lion, especially in public, especially when she feels uncomfortable. She doesn’t know how to whisper. She sings her own songs. She has an extensive vocabulary, but it’s not our vocabulary. We have to decipher, translate. It’s tiring and frustrating for us all, her most of all. She’s just turned three – why should she have to fight so hard to have her voice heard?
We are lucky. We have savings, and family help. We are paying a consultant to put grommets in her ears and drain the poison. He says that after the fifteen minute procedure she will be able to hear perfectly, immediately. It’s like magic. Every morning I wake up one day closer to being able to give her this gift. Once we gave up on the public system, it has taken us about six weeks all in to arrange the private procedure. The hospital is like a luxury health spa. There is no waiting on hard chairs in heaving public clinics. Just the restrained murmur of glossy-looking staff ushering us down carpeted, softly-lit corridors into corner offices with floor-to-ceiling windows.
It is a travesty, the injustice and imbalance of it all. My child will get to hear in two weeks time, but other children will still be waiting. We’re supporting this deeply flawed system by buying ourselves an in.
Fighting to take her coat off in a howling gale, because that’s the kind of child she is.
Because I am hoping that having her ears fixed will free her. That she won’t scream wordlessly for something that we can’t decipher. That she won’t grab her hair and make an incessant droning noise instead of crying. That I won’t spend my days on the edge of my last nerve from trying to work out what she needs, and my evenings bowed down with guilt at my small unkindnesses and impatience.
There are a lot of blogs, and memes, and Facebook threads, and internet fora about being a parent. About drinking gin and ignoring the washing pile and #parentingfail and wine o’clock and me as a parent and so on.
I get it. We like to feel like our frustrations are normal. We like to acknowledge the grim side, the drudgery, the constant attempts not to lose ourselves, to have our identities subsumed by parenthood. Black humour is a good vehicle for that. I’m good with the joking.
But I can’t really do it myself. I can’t make the jokes at the moment. I know I could try to make myself feel better by laughing at my failings, but it isn’t really very funny. Because I really am failing, in so many small ways. Every time I shout at them before we’ve even gone downstairs for breakfast. Every time I swear not-quite-under my breath. Every time I roll my eyes when I hear crying, instead of greeting the tears with kindness.
It’s constantly wishing I could be better, promising that I’ll be better, whispering in their sleeping ears that tomorrow I will be better. It’s a slog. It’s trudging up endless hills.
But at the top of the hill – what a view.