Wednesday, May 23, 2007

Losing That Baby Look!

That's what many people have told me this month. Charlie is officially losing that 'baby look'. I'll be honest - this terrifies me; partly bacause Charlie has to be my last baby, so I'll never be here again; and partly because as Charlie moves through each stage, I have to acknowledge and face different realisations and challenges.

In fairness, Charlie has so far proved far less of a challenge than I could have imagined in the bleak first few days after his birth. When I have discussed those initial days with close friends and family since, one question has consistently reoccurred:

"How did you get through it?"

The answer is simple. I got through it because grief, no matter how intense, is not terminal: I survived because I didn't die! In the first few moments, I thought I might. In the fiirst hour, I wished I could. In the first weeks, I awoke with a crushing, heavy sensation and thought "When will this awful feeling go?" I didn't want Charlie to go of course. By now, I couldn't take my eyes off him and he held my heart with an iron grip. I just wanted the nagging sense of gloom to be gone.

I'd always felt the "Why me?" question was pointless. I believed the universe was random, so the obvious answer was "Why not?" After Charlie, it didn't seem quite so random. Having a third child with a disibiliry actually feels far from random - you feel singled out! You can't avoid the "What did I do to deserve this?" thought. Sometimes when he's unsettled, and I bring him into bed withus for a little while, I lie next to him and hold eye-contact, return smiles, even echo the sleepy giggles and that thought came back to me.

"What did I do to deserve this?...What did I do to deserve you?"

In those private, personal moments, I know it must have been something really good! But this realisation doesn't stop me worrying about my children's future: How they'll cope, What they'll become, What will become of them?

I spoke to a friend recently about a television programme she had seen. The programme featured young adults with Down Syndrome going about their working life. It shared their successes and disappointments. It's worth mentioning here that my friend has a baby daughter who also has Down Syndrome. The programme had upset her and she'd turned it off before it ended filled with fear about what her daughter's future might hold. I've had this feeling many times. Having now turned into a DS stalker, I can often be found lurking in shopping aisles, tailing the trollies of people I have noticed with Down Syndrome. Sometimes there's something fundamentally adorable about them, they seem to be coping really well, sharing a laugh with family, choosing their favourite nibbles and I walk away feeling reassured. Other times, they seem frail, prematurely old, wistful looking and there's something fundamentally heart-wrenching about them. I walk away terrified, wondering how Charlie will cope when I'm not here to look after him. For that matter what will happen to all three of my babes?

But at the end of the day the worrying is pointless and self destructive so I now actively avoid looking too far ahead and I console myself with the words of Anne Lamott:

You don't have to see where you're going, you don't have to see your destination or everything you will pass along the way. You just have to see two or three feet ahead of you.

The two or three feet ahead of Charlie at the moment holds only minor questions: Will he be able to stand soon? How long will I get away without cutting his hair? Did that sound like 'Mum' to anyone else?

Maybe every parent would gain a little something from just pausing a moment and enjoying their children today, now, in the moment they're in. Letting go of all the everyday worries;

'Will they make the football team?' 'How will their SAT results be?' 'Are they too timid/boisterous/confident?'

Just for a minute let it all go and think:

'Who cares? They're mine and I love them.'

Here's something I read recently:

All parents worry about their children's future and see plenty of examples of what they don't want their kids to become. Its human to hope that our child won't be rude like Uncle Stuart, or mean, or lazy, or dishonest. When our child has a disability, the negative possibilities may seem more clearly defined and more certain and, most important, more alien. We may never have had a meaningful personal exchange with an adult with disabilities, so we have no way to imagine such an interaction as something other than distasteful, uncomfortable, or frightening. The parent of a toddler with severe brain damage, seeing an adult who is profoundly retarded looks at his child and thinks, "Will I still love him tomorrow?" But our child won't be an adult tomorrow. He is not, suddenly, overnight, going to become the shadow on the wall or the monster in the closet of our imagination. And when he is grown, we will not see him as defective or hopelessly dependent, because he will still be our child, someone we have loved, grown with, and come to know day by day.

I will live today loving my child as he is right now, and not project fearful possibilities into the future.

So that's what I'm doing and to be honest, it really isn't that difficult. Looking at Charlie, it's impossible not to love him - he's beautiful. Paul thinks he's the bonniest baby he's ever seen and although it's completely improper to brag like this - I've never seen a child I thought as cute. I happily wear the rose coloured spectacles of a mother and believe he is gorgeous. Not "Cute considering the Downs" or "Adorable in his own way!" but genuinely, heart-stoppingly gorgeous. Doesn't this make me normal? Aren't my unrealistic ideals the same as the ones held by most loving parents?

I don't know what the future holds for any of us but I know the morning will never come when I look at my children and don't feel that 'love at first sight' lurch in the stomach. I think that's all I really need to know!

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