The privilege of touch

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One of the main things about having kids is how much they touch you – from months of carrying around a baby, possibly breastfeeding them, to years of having a child on your lap and a snotty nose wiped on your arm. It can feel like near constant touching. Of smooth baby skin smelling of milk, of small fingers squeezing you, of hands whacking you in the face.

The physical relationship between a parent and a kid is so unselfconscious and incredibly lovely. Stella is just learning how to kiss and when she hasn’t seen me for a while she will come to give me a cuddle and then repeatedly touch her cheek and mouth to my lips. It is delightful. As Eli has got older there are less frequent but more prized requests for a cuddle, and I will never say no.

When you raise a small child, you get to know their body so well that not only do you know what it feels like, but you also know how it moves. If I see Eli walking down the road, I know if he is happy or sad. If James sends me a photo of one of the kids where you can’t see their face clearly, I’ll probably be able to tell what kind of mood they were in.

In some ways I know Sam’s body better than my other kids. Eli and Stella can choose to walk away from me, or to move their body in almost any way they like. If Sam is sitting on my lap, he will be there for as long as I choose (though of course he can make clear whether he is enjoying it or not). While he is sitting on me, I will be supporting him. Both James and I have been doing this for so long we couldn’t now describe what we are doing, but we use our arms, legs, torso and head to mimic a seat, to find a comfortable way for us both to be within the whirl of Sam’s ever moving body. Sometimes it’s not easy, but in this we join a long list of parents prioritising providing comfort to their child over backache.

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When Sam was little, we would spend hours holding him and rocking him in a figure-of-eight pattern, to ease the pain of reflux or to calm him sufficiently for him to sleep. These days he’s way too big for that and he spends more time sitting in a specialist chair, with us nearby. It is a less intimate physical connection but still one within which I know his body. The nature of Sam’s disability means he moves a lot, and has limited volitional control over the movements, but within the apparent flurry of limbs there is meaning.

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Sam’s often communicates his emotions by making noises – there are different kinds of sounds for happy, sad, interested, annoyed. But even without the noises, just from the way he is moving his body I could tell you whether he’s in pain or just bored. I could tell you whether Sam’s excited or frustrated. Not always, but often.

Sometimes Sam’s body needs to be moved in ways that it does not do easily. I know how to play his limbs, how to bend his knee and turn his foot in just the right way to get his shoe on properly without hurting his toes. I know what kinds of movement he likes, and what he will find irritating (and therefore which TV programme will distract him, if it needs to be done).

His is a body that can frustrate him and be difficult for others to manage. His is a body about which there are meetings held and training delivered to consider ‘health and safety’. But this body of his, which some people may see as inferior or less desirable, is actually something of real value. In the absence of being able to talk, his body can tell the story. In the same way that I can sometimes tell from the particular sound of his cough whether he needs to see a GP, I will be able to tell a therapist whether he is in pain or not from the particular way he moves his pelvis.

I treasure this knowledge I have. That even when my relationship with him, with all my kids as they grow up, is becoming less physical in the every day, that I still know these bodies. They are not mine – I am just nurturing them until they can look after themselves. But as the days of holding newborns recede, there is no absence of the raw physicality of touch, and the accumulated knowledge of knowing how these bodies work. It is an absolute privilege.

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Cuddling and carrying

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Recently I have found myself talking about good things that have resulted from Sam’s birth and life. It’s now less eight weeks until the birth of a new baby so a good time to focus on the positive.

One of these conversations was about carrying Sam. Sam is almost 18kg which is very light for an almost-six year old but quite heavy for someone who can’t support any of their own bodyweight. He has various pieces of equipment to sit or stand in but every day there are dozens of transfers to be done: from bed to changing table, downstairs to specialist chair, out of chair to changing table, back in to chair, in to wheelchair, out of wheelchair, changing table, upstairs, in and out of standing frame, in and out of bath, etc etc. This is just the basics – if we spend the day doing things away from home there will probably be more lifting – so Sam can sit on top of the sculpture in the park like Eli, or to be lifted so he can see animals over the fence, or in order to sneak up on people in the woods.

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We are just on the cusp of getting a hoist to help us with some of these transfers. A hoist is a machine which attaches to a sling underneath Sam and lifts him up. We have known this is coming for a while and I find myself surprisingly philosophical. I strongly suspect Sam won’t mind – he loves swings and hammocks (and zipwires) so I don’t think he will mind repeated suspensions throughout the day. I know there is only so long we can ask others to lift him and we have a responsibility to provide an option that doesn’t endanger back muscles.

It’s the mediation of my relationship with my son through equipment that I resent. At the moment I often lift Sam like (for want of a better description) a baby, with one arm cradled under his neck and the other under his legs. He always looks up when I do this and I can look down at his beautiful little face, and he often has an expression of pure joy and comfort. Should anyone else infantilise Sam I will hate them forever (or close), but I am allowed. I have been carrying him this way for almost six years. One of the joys of early motherhood is the physicality of it – small boys who know your body better than you do and want their skin on yours. It is sad that these moments will be slowly replaced by the attachment of a sling to a hook, the pressing of some buttons and the whirr of a machine. I must find a way to keep the physical connection, for us to both remember the joy of him being on my lap.

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James does most of the outdoor carrying – he is the one helping him climb trees – but I do my fair share of the lifting, including carrying Sam up and down stairs at home. Earlier this year, before I was pregnant, we realised that if I was going to continue doing this I needed to be strong so in addition to running a bit I started seeing a personal trainer who focused on weights and strength. No-one should get the wrong idea about this – my default position is inactivity and I didn’t voluntarily run outside until I was 32. I am no gym bunny. My relationship with the trainer involves him encouraging and/or forcing me to stop being so pathetic while I deny eating a loaf of sourdough bread every week. I do not look like someone who spends a lot of time exercising (because I don’t).

But what began as a way to continue lifting Sam has been a revelation. Partly because it’s time spent doing something completely different to wiping small children, but mainly because I didn’t realise how empowering it would be to feel strong.

Then I got pregnant and as my bump has grown I have carried on lifting Sam and training at the gym. Nothing feels more satisfying than lifting (admittedly small) weights, surrounded by grunting men in vests, in the male-dominated section of the gym. Or continuing to be able to do all of the things I would normally do with Sam while 31 weeks pregnant. Sam is very accommodating of being literally pushed aside by a growing bump. I get a bit out of breath as we get to the top of the stairs when I’m carrying him, but I can do it and I will carry on for as long as I am able. There will inevitably be a month or so post-birth when I can’t lift him and even holding him might be tricky, so I’m making the most of it while I can. I am extremely appreciative of having this body, which is making its third baby and still able to carry its first.

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I have been going through a phase of obsession with the author Kate Atkinson and came to re-read a book of hers recently. I had forgotten how utterly unsuited the storyline is to me right now; I had to abandon it after a scene about a mother being murdered in front of her children precipitated some particularly heartfelt weeping. But just before that I read this passage:

‘ Their mother was wearing Joanna’s favourite dress, blue with a pattern of red strawberries. Their mother said it was old and next summer she would cut it up and make something for Joanna out of it if she liked. Joanna could see the muscles on her mother’s tanned legs moving as she pushed the buggy up the hill. She was strong. Their father said she was ‘fierce’. Joanna liked that word. Jessica was fierce too.’

Kate Atkinson, When Will There Be Good News?

I want to be strong. And when it comes to caring for my kids, I want to be fierce.