Thursday, 26 August 2010

Maggie at the end of August

This is the man who rescuscitated Maggie at birth. Who told us to prepare for the worst. Who told us that she’d be lucky to make it through the night. Who told us that we should, perhaps, think about saying our goodbyes.

Last week, nine months later: Shannon is at the hospital with Maggie, with this same man, effectively getting signed out, getting discharged, saying goodbye to the man who was supposedly the expert when it came to her care and development.

He could barely be bothered to look at her. This girl who – in defiance of the early prognosis – was sitting on Shannon’s lap, reaching out, smiling, looking for all the world like a normal baby. He could barely be bothered to look at her.

The utter cunt.

Shannon returned home very upset. It’s not that she was looking for expert advice and guidance (we’d given up on that a long time ago) but was perhaps hoping for him to turn to Maggie and say: “Wow. Look at the way she’s come on.” Or even: “What a lovely smile.” She was looking for a bit of humanity.

But nothing.

He asked after me though.” How’s Paul getting on?” Who cares? Fucking hell.

The truth is – and we’ve known it for a while – we’re on our own when it comes to Maggie. And I don’t just mean medically. It’s painful to admit but a disabled kid puts people right off. All sorts of people.

Julia, the community nurse we really like, suggested the other day that maybe Maggie would be better going to a nursery that deals exclusively with kids with special needs. Our inital reaction was that we wanted her to be with normal kids, in a normal nursery. But then Julia pointed out that it would be beneficial to Maggie to continue receiving the kind of care that has so far helped her to surpass all those early expectations.

This is a child who should have died. Who, when she didn’t die, should have been a quadriplegic with no quality of life. Imagine, for a moment, that you’re her consultant. Wouldn’t you be extremely impressed at the way she’s gone? Wouldn’t you be wanting to suggest to the parents things they could be doing to help her, to push her along this path of surprise?

(Path of surprise? Fucking hell.)

We get nothing.

For instance, Maggie’s reaching out. Literally, physically. So who’s there telling us that if you do this or do that she’ll be able to do it so much better? No-one. We make it up as we go along.

She’s done so well, so brilliantly. We sometimes forget that because, at the same time, she can be really fucking annoying. She’s awake half the night. She won’t be left for more than a minute. She’s constantly grunting and moaning and pissing us off. Yet, even with that, she’s still way ahead of where they thought she’d be. Her consultant should be over the moon about that. But he barely gives a fuck. Or, rather, gave a fuck.

My brother came to see us the other weekend. He’s a bit like me, my brother, but without the smoother edges. He was fucking brilliant with Maggie. He grabbed her, he took her out, he played with her, he threw her up and down and he didn’t – for a minute – worry about the fact that she’s disabled. He treated her like a normal baby. We haven’t seen anyone else do that.

I won’t tell him this but: Shannon and I cried while we watched him outside with her, carrying on as if all was as it should be. He was really great. I hope Maggie appreciated it.

They're eleven months soon, these girls. One-year-old next month. How time flies.

Wednesday, 11 August 2010


We often say to people: "Alice is perfect. She's lovely and bright, an absolute joy to be with. And she doesn't give us a moment's trouble."

In response, we often hear: "Yes, XXXXX is like that too."

But it's not true. Because then they'll go on to say how XXXXX cries when he/she is left alone, or when he/she has her nappy changed, or when he/she is tired and/or hungry.

I can't stress it enough: Alice is a perfect baby. She doesn't give us a moment's trouble.

God bless her.

Because I don't believe in God, it means a lot when I say that.

One day we'll tell her how grateful we are. How happy we are to have such a perfect and beautiful daughter.

God bless Alice.