The dishes can wait

I don’t think I’ve ever successfully kept a New Year’s resolution. However, it seems almost obligatory at this time of year to write some kind of reflective or predictive post. And, in our back garden this afternoon the soil was warming up, the hellebores and forsythia were flowering, there were catkins, and it was daylight (just) at four o’clock. There may still, literally and metaphorically, be dark days ahead before the spring but everything, at least for now, seemed full of hope and promise. So here are my hopes and promises for the coming year.

Benjamin, I will give you more attention. You are the quiet one, the uncomplaining one, the contented one, the “plonk him in the corner with a toy while I get on with something” one. I’ve been reading a couple of challenging books lately. The first is What Every Parent Needs to Know by Margot Sunderland. In it she describes how, when a child is separated from a loving carer, even when they appear perfectly content, emotional damage can occur. So, Benjy, I will give you more cuddles, more conversations, more often.

Jackie, I will explain things better. You’re not a baby any more. You understand when there’s a good reason not to do something and when Mummy’s just being lazy. You know when things aren’t right and you deserve to know why. The second book on my bedside table is Kate Strohm’s Being the Other One, about growing up as the sibling of a disabled child. I haven’t finished it yet – I’ve only read the chapters about problems, not those about solutions – but it seems that one thing most siblings would have wanted from an earlier age was to understand and to be involved. Jackie, I will take time to explain things and to let you help, no matter how long it takes.

My husband, I will stop expecting you to be a mind-reader. I will try to explain clearly what I’d like you to do and when I’d like you to do it, before getting upset that you haven’t done it or haven’t done it on time.

My parents, I will try to remember that, to you, I’m still your little girl and you only want to help. I will try to take your help and advice in the way it’s intended and not see it as a criticism of how I do things.

My gran, I will call you more often. You are my last living grandparent and my children’s last great-grandparent. When we returned from our Christmas break, you had left a message on the voicemail every day thanking us for the pathetic box of marzipan we bought you. I find it awkward to call you because you’re rather deaf and we don’t have much to talk about but, Nanny, I will do it more often.

My friends, I will stop making excuses. If you ask me out, I will make an effort to be there, no matter how much ironing is piling up at home.

Myself, I will take a little time to relax. When Ric bought me a selection of bubble baths for Christmas my first thought was How silly, he knows I only ever have time for a shower. Then I realised, he wasn’t giving me bubble bath, he was giving me a license to have a bath. An excuse to sit for ten minutes (maybe even half an hour!) without chasing the kids, cooking the dinner, doing the chores; without laptop or phone. Maybe listening to the radio, maybe gathering my thoughts, maybe just drifting. I will make use of that gift.

In sum, I have made only one resolution (and perhaps that’s for the best): to make time for people. Whether that’s shouting down the phone so my gran can hear or giving my kids an extra cuddle. I have been a sucker for “getting things done.” Let’s just wash the dishes, then we can do some drawing… If there’s time after the house is tidy then I’ll come out… I’ll explain things later… So my aspiration for 2015 is, wherever there’s a choice between doing a job or interacting with a person, to choose the person. The dishes can wait.


Four generations


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.


The manual

Type “parenting books” into Amazon and you get almost 84,000 hits. At least one of those books, I would have thought, would match our situation. By which I mean our children and our preferred style of parenting. But I haven’t found it yet.

With our first child we tried, at least broadly, to follow attachment parenting* principles. I breast-fed, exclusively, on demand, and until she was happy to stop. Since she fed often during the night we co-slept, often, and at two-and-a-half she’s still frequently in our bed by morning. We carried her in a sling and weaned her onto finger-foods at her own pace, not a puree or a spoon in sight (except for yogurt. Yogurt without a spoon is a step too far). I looked forward to something similar second-time round.

But how are we supposed to translate this to a special needs baby? On day one, we struggled with breastfeeding. By day two, we were syringe-feeding, finger-feeding and, yes, formula-feeding. Not on demand but on a punishing schedule instigated by the threat that unless we could get 30 mls of milk – any milk – into him every three hours he would have to be fed through a tube. That would mean taking him into the neonatal unit, which had no beds free for me to stay with him. So, to maintain any level of attachment at this stage we were already compromising.

We finally succeeded with breast-feeding, although it was – is – hard to shake the habit of forcing a nipple into his mouth every three hours, hard to trust that he can show – that he can even tell – when he’s hungry. Especially since for the first few months he seemed happy to go all day without food and then indulge in a marathon six-hour banquet every evening, just when there was a dinner to cook and a toddler to bath and put to bed. Later, as you know, we did move back, partially, onto formula, which has reduced those evening sessions down to a couple of hours. And yes, much as I complained about them, I now miss them!

Baby-led weaning, in the strict sense, is out of the question. He does not grasp anything with intent and rarely brings his hands anywhere near his mouth, so that wasn’t going to work. It’ll be old-fashioned spoon-fed purees all the way. But we do try to let him lead and, remarkably, he does communicate what he wants. Place a spoon to his lips and if he’s hungry they will open. He eats until he’s full and at the next spoonful his lips remain firmly closed. He also communicates his likes and dislikes: chicken, cauliflower or peach, mouth open; potato or plum, mouth firmly closed. (Although like most children, at the first mouthful of anything he acts suspicious and makes a face like you’ve just fed him a wasp). I’ll be happy to spend several years pureeing peaches if he maintains some control, some choice, even some enjoyment out of his food.

Co-sleeping we have managed. In fact sometimes when he was unable to maintain his own temperature (being born in late November in Scotland didn’t help) it was the only way we could be sure to keep him warm. And the warmth and humidity of our bed seemed to help ease his breathing during the frequent respiratory infections too. But he’s also perfectly happy in his own cot now, and if he’s happy, that’s just fine.

As I’ve said before, we’ve been lucky. I don’t know how you feed on demand if you are feeding through a naso-gastric tube. I don’t know how you get enough skin-to-skin contact if your baby is in an incubator in intensive care. What’s clear to me is that attachment parenting is much more about a mind-set than a set of rules. As Margot Sunderland describes in What Every Parent Needs to Know, it’s the attitude of love, nurture and playfulness that can do amazing things for a child’s – any child’s – development.


What’s proving hardest is learning how to listen. He doesn’t “root” at the breast. He doesn’t open his mouth for the spoon immediately it’s placed to his lips. He rarely cries when he’s hungry, hot, or dirty – instead his muscles tense in reaction so that he appears to arch away from the breast or bottle at the very time he needs food and comfort the most. But we’re learning to read these signals now. It’s a new language, but it’s worth learning. At the heart of attachment is a relationship based on communication, and at the heart of every relationship are individuals. And that’s why there can be no manual, we are all writing our own as we go along.

*Or gentle parenting, evolutionary parenting, etc. I will stick to what is perhaps the best-known term, not least thanks to Peaches Geldof, RIP.