I keep having these little moments of joy every time I think about the fact that Maggie can hear. Although we knew the implications of what it would have been like had she been deaf, it hadn’t really sunk in. It’s only now – now that we know she’s okay – that we’re willing to fully contemplate how terrible it would have been.
It’s just sheer relief. One less thing we have to worry about.
But while Maggie being able to hear is a real cause for celebration, we still have the awful reality of her condition. And that includes accepting that discovering she can hear is a kind of false progression. Because the thing is, she never was deaf. It’s not like she’s recovered her hearing or made a fantastic, unexpected leap. She is as she always was, despite failing her hearing test the first time round and causing us no end of worry.
I say that not to take anything away from all that’s positive about her being able to hear. I say it because it’d be wrong to think of this as an indication of progression or an indication of how things might not be as bad as first thought. If you see what I mean.
And no, that’s not just me being a miserable git. Because the one significant thing the news gave us was a massive lift. Something that will help us to cope a little better with everything else.
Talking of which.
Maggie’s been having a few bad nights recently. During the early hours where she, apparently, becomes distressed beyond the point where she can be comforted. There may be a number of reasons for this. It could be acid reflux, it could be cerebral irritations, it could be wind. Disappointingly, it’s usually treated as cerebral irritations which means that she gets a dose of chloral hydrate to get her to sleep.
The knock-on effect of this is that it makes her drowsy well into the next day. Which makes her less alert and less responsive to things like physiotherapy and speech therapy - as well as not being awake enough to just get her brain going in the way that a normal baby’s would. It’s a bit of a vicious circle.
It seemed to us that on occasion she’d been given the chloral hydrate a little too quickly. One night we rang at 2am and were told that she was settled and fine. And yet the next morning we were told that they’d had to give her chloral hydrate at 2.45am. So within 45 minutes one of the nurses had decided that she’d been distressed for so long that she needed medication. Nonsense, obviously.
So today Shannon had a word with one of the consultants. This resulted in deciding to always thoroughly explore other reasons for Maggie’s distress before medicating her. So maybe first a dose of paracetomol or antacid to see if that helps. This conversation also resulted in Maggie being put back on to three hourly feeds – again, something that will encourage her to be more awake and alert during the day.
On another note, I received a reply yesterday to an email I sent to Sir Terry Leahy, Chief Executive of Tesco. I wrote to say how disappointed I was that every time we go to his supermarket, the disabled parking spaces are full of cars belonging to able-bodied people.
The reply (from his assistant) was thorough, professional and extremely courteous. They outlined a number of things they do to tackle the problem and hinted at some newer initiatives. They also spoke to the manager of our local store who said that while he wasn’t aware of any current problems, he would definitely look into it. Interestingly, they said that Tesco staff are often abused when they try to tackle these offenders. Can you imagine that – having the brass neck to not only park in a disabled spot but to also aggressively defend yourself when caught out? Amazing.
We went to Tesco this evening. Of the six cars parked in the disabled spots, only one belonged to a disabled driver.
But this is one of the things I worry about: that having a disabled daughter will make me even more conscious of the fact that I share a world with selfish, stupid twats. Which’d be fine were it not for the fact that I go out of my way to seek them out - just to confirm that I’m right and to wind myself up. I should get a grip.
But, y’know, despite all the twats and the chloral hydrate and all that I said above about it being a false progression, knowing that Maggie can hear really has made me beyond happy.
Alice, by the way, is thriving and fine and lovely. She was up late with me last night watching a documentary about James Brown’s performance in Boston after the assassination of Martin Luther King. It’s easy to forget sometimes but there really was no one to touch him. Michael Jackson? Bollocks. Have a look at him below doing his famous stricken routine which results in him having to be covered with a cape and escorted off the stage. Absolute magic.
When Maggie gets home we’re going to have a full on session with James Brown - just to give her ears a real treat.