Sam’s Dad

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If I could undo Sam’s disability I would. I don’t have any time for the idea that it is part of some plan, or that Special People have Special Children, or that this is the way Sam was meant to be. Sam was a healthy, fully able baby in my womb, then his brain was damaged and now he is disabled. When he is older he can tell me what he thinks, but in my view it would be better if he wasn’t disabled. There is almost nothing that has followed from his birth I wouldn’t give back in order for him to be able to walk and talk. Of course this becomes more and more theoretical as he gets older, and we can’t imagine him any other way.

Sam is disabled, and he can’t walk and talk. But Sam is happy and healthy so we must get on with it.

However, one thing that I know now, that perhaps I wouldn’t have known quite so clearly without Sam’s disability, is that I married the right man. I am lucky. For this I am extraordinarily thankful.

Last week marked the anniversary of James and I getting together exactly fifteen years ago, when we were undergraduates spending too much time watching Neighbours and drinking too many pints of cheap lager. In the following ten years we had many adventures and a lot of fun, travelling frequently and building careers.

Then, five years ago, when Sam was born everything changed. I have no doubt that I wouldn’t have made it through the first year of Sam’s life relatively unscathed if I hadn’t had James. We were worried and sad. It seemed hard to have fun. But at least we were doing it together.

There is no equivalent to the shared responsibility of parenting, the person who is as interested as you in some domestic anecdote about something your child has done, who is as pleased as you are with a small development. I have taken on the majority of day-to-day care and co-ordination of Sam’s life, but James is always there listening, commenting and encouraging. James can do everything for Sam that I do and will do it happily, be that getting up almost every night with him for 6 months when I was breastfeeding newborn Eli, or feeding him and giving him cuddles.

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I do not take this for granted. Statistics about relationships of parents of disabled children are chilling: you are more likely to separate if your child is disabled. The combination of demands (physical, financial and psychological) and stress are too much for many couples.

I can’t help think this isn’t helped by many professionals addressing themselves almost exclusively to mothers. We have had numerous experiences in hospitals, clinics or at home where people talk to me and ignore James. They do not ask his opinion, or literally talk to me about Sam with their back to James (for example, about the risks of an impending general anaesthetic).

But it is a fundamental misunderstanding of the dynamic of our family to think James isn’t interested or involved in Sam’s day-to-day life. It is not only insulting to James by minimising his role as Sam’s father, but also puts more pressure on me as the one who should know everything and shoulder most of the responsibility.

It also doesn’t account for my notoriously unreliable memory versus James’s ability for near-perfect recall. Or that James combines all this parenting with a full-time job. Or that, for example, he’s taken a day of leave from that job to be sat on a hospital ward being ignored by a junior doctor.

Sometimes I look at my kids and I almost can’t cope with the amount that I love them. I felt like this about my younger sisters when they were small – I sometimes almost crushed them with cuddles. Like yesterday when I collected Sam from school; I walked in to his classroom and he was so obviously happy to be there, and then saw me and looked like he was the happiest he had ever been.

The only thing better than that feeling of fierce pride and overwhelming love is witnessing it between your husband and your children. He loves them as much as I do, and we are all Team Sam.

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Cuddling

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The other day my mum sent me a link to a blog by Alain de Botton about psychoanalyst John Bowlby and his work on attachment theory. “I’m not sending it for any particular reason by the way”, she added a little nervously – presumably just in case I thought she was accusing me of raising children with attachment disorders.

I know very little about psychoanalysis and so a lot of the detail is unfamiliar to me. Essentially I understand from the article that Bowlby looked at how our experience of early maternal care shapes the way we form relationships throughout our lives, suggesting that kindness does not smother and spoil children.

“Bowlby poignantly invokes loving care that a little boy needs: ‘all the cuddling and playing, the intimacies of suckling by which a child learns the comfort of his mother’s body, the rituals of washing and dressing by which through her pride and tenderness towards his little limbs he learns the values of his own…’ Such experiences teach a basic trust.”

The typical development of children is that they are wholly dependent when babies, in a tactile, floppy, defenceless way and then as they grow they get more physically and psychologically independent. They begin to sit in a highchair rather than your lap, they crawl and then run away from you, they talk to people without needing you to interpret. Much of this trajectory is stalled or disrupted for Sam; he is still dependent, he cannot move away.

This means we retain the lovely physical proximity of a child on your lap, of a small head nestled in your neck. We now know his body almost as well as he does and he knows exactly what we feel like.

In the 1950s Bowlby researched the trauma experienced by children who were separated from their parents during hospital stays, when visiting times were restricted and mothers not allowed to hold their sick children.

 “It took a long time for Bowlby’s ideas about the importance of the early bond between the mother and child to get broader recognition and support. But it did happen, eventually. There was no single dramatic revolutionary moment. Many thousands of people changed their minds in small ways: an idea that sounded stupid, came to seem mildly interesting… so that today a child facing a frightening operation is surrounded by love and kindness and her parents get to sleep in a bed beside her.”

I wasn’t able to hold Sam until he was four days old when he was still surrounded by wires and tubes. On day six we visited the hospital and were holding him for most of the day. A nurse said we should be careful we didn’t spoil him – if he got too used to cuddles he would want them all the time. I think that was an incredibly mean-spirited thing to have said to people in our position. I couldn’t imagine anything better than being able to cuddle my son all the time, and hated that we left him there overnight while we returned home. The saving grace was that we didn’t really know him yet and he was so ill that he needed nurses more than he needed parents.

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Recently we have spent two days in a different hospital while Sam has had general anaesthetics for tests. He knows exactly what’s going on and puts up with the whole thing with extraordinary patience. No-one loves being in hospital – that unique combination of lack of control, limited daylight and sitting around makes me feel more exhausted than after a run. But the bit of the day that is almost unbearable is the period of time when I know Sam is sedated and that he will wake up soon, but I can’t be certain they will come and get me immediately. So there may be a moment when he opens his eyes and he’s in an unfamiliar room, confused by the fading anaesthetic, surrounded by strangers. I don’t know if it’s a legacy of the early hospital stay or the fierce protectiveness of motherhood, but it makes me feel incredibly sad. Imagine if we weren’t there at all, if we weren’t allowed to be there.

Bowlby’s work suggests that children need parents to be consistent and loving, to meet their needs and make them feel safe. That, he argues, is how children develop into adults who can form healthy relationships.

Sam’s disability means he is dependent on many adults; he has more physical contact than an average four year old would have with people who aren’t his parents. More intimate tasks undertaken by people he hasn’t necessarily chosen. James and I can’t do all of the ‘mothering’ that Bowlby describes so we have to broaden the circle and hope that we can still produce a child who is secure in his attachment, who feels safe and has healthy relationships.

Sam needs a village, not just two parents, to tend to his washing and dressing, the feeding and cuddling. He and we are used to him being looked after by other people, some paid some not. We hope that by making sure these people are kind and competent he feels secure. He can tell whether he can trust people – whether they are holding him safely and will meet his needs.

We are looking into having someone stay at our house overnight to get up with Sam when he wakes. Almost five years of getting up most nights is a lot of missed sleep and I like the idea of someone else doing it. It is the next stage in a life that will only involve more paid carers, not fewer.

But of course, the reality is that someone else will be going in to Sam, into his bedroom at 3 in the morning, when he expects it to be me. We can interview suitable candidates and check their CVs but really you want someone who will cuddle correctly in the middle of the night and that’s tricky to test. We have to have high standards – there is nothing more important than a four year old boy feeling safe in his own bed. It is our responsibility, and it’s making us anxious.

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Top photo: Sam with my sister Maddy when he was 3 months old