Each day as it comes

On the whole I manage to avoid thinking about my own future, but it’s hard not to dream for your kids.

On Friday I took the baby to our third outpatient appointment of the week; my husband took our little girl swimming. The dietician was running an hour late (only to tell me to carry on as we have been doing), so instead of meeting up for a nice family lunch we had a rushed handover before hubby raced back to work and I dragged the two tired children home on the train. On Thursday, a sleep-system-fitting took longer than anticipated so I was late to collect my daughter from nursery – waiting in her bedraggled pirate costume she was the last, lonely one left. On Monday, I had no option but to drag her in to the city for the baby’s EEG. At least they had Peppa Pig DVDs.

Add to that the hours I’ve spent – just this week – phoning the geneticist, the paediatrician, the hydrotherapist, the wheelchair centre, the GP, getting him weighed, collecting prescriptions, when I should have been taking her to the playpark or building lego, and I wonder about the impact this is having on her life. I’ve little time to cook wholesome meals, let alone make nutritious snacks for in-between. No time to get the paints out or make her a proper costume for Halloween (hence the pound-shop pirate outfit). An early years’ specialist brought new toys for him – a “be-active” box and a light-up umbrella, while all she gets is an extra chocolate biscuit as a bribe not to touch them.

We knew from the start that this would affect everyone in the family – his grandparents, cousins, but, most of all, his sister. Does it make it worse or better that she’s too young to know anything else? Already she knows the route from the railway station to the Sick Kids Hospital. She knows exactly where the best stash of toys is kept at the GP’s surgery. She looks forward to the physio’s visit as one of the (meagre) highlights of her week. Her future holidays are mapped-out, not in foreign adventures but in wheelchair-friendly apartments accessible by estate car. Worst of all, she is no longer allowed to creep into our bed in the middle of the night. Partly because her wriggling keeps us awake, but also because there just wasn’t enough space if the baby needed to come in too. I miss her warm, soft, sleepy pre-dawn cuddles so much.

Of course, most of this is simply the effect of having more than one child. Those who choose to have a second know that the first will no longer be the centre of their universe; that she will have to learn to share, to be quiet while baby is sleeping, to occupy herself while he is feeding. But, usually that’s more-than-made-up-for by the gain of a new “toy”, later a playmate, confidante, partner in crime; she’ll never have that. Yet, far from being resentful, when he cries for Mummy’s attention she doesn’t compete, she tries to comfort him too. When she falls down and grazes a knee, what’s the first thing she wants? Not a kiss from mummy or a hug from daddy, but to hold her baby brother’s hand. When she’s tired, who does she want to snuggle up with? “My baby brother.”

She doesn’t notice that he’s different, that he should be rolling, kicking, sitting, burbling, interacting, she just takes him exactly as he comes and looks for the fun they can have together. And she’s absolutely right: the way to acceptance and comfort lies in taking each day – each moment – as it comes and seizing those opportunities that arise, not mourning the ones that slipped away. So what if somewhere in the multiverse I have a “normal” baby boy and my little girl has a normal(ish) life? Somewhere else, she’s a doted-on only child… somewhere else, neither of them exist at all.

Maybe she won’t walk the Great Wall of China or the Inca Trail with us … maybe she’ll do it by herself … maybe she couldn’t imagine anything more tedious! For now, a trip on the train, a visit to Sick Kids, friendly nurses to make a fuss of her and lunch in a café drinking lemonade like a grown-up is just a great day out. Long may it stay that way.

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