New School

We are coming out of the post-surgery haze. Having come out of hospital one week after the operation, Sam started at a new school exactly two weeks after surgery. We had feared that he wouldn’t be well enough and might miss the beginning of term, so it felt like a huge win to get him there in one (slightly bruised, stitched together) piece.

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James has taken a significant chunk of time off work so we have had the luxury of introducing Sam to school slowly, calmly, with both of us around to make it work. We have been able to take him in together, learning how to drive into central London without killing a cyclist or getting embedded in a stationary traffic jam, and pick him up early. Eli has come in with us and got to know the new school. We have all been able to meet the staff and see where Sam spends his day. It’s all been significantly less stressful than I anticipated.

It’s not all been plain sailing. Until earlier this week Sam had periods of profound unhappiness which couldn’t be resolved with paracetamol, or ibuprofen, or TV, or books, or lying in bed. There are few things more sapping than spending four hours with a child who is really unhappy and being apparently incapable of making things better. Maybe he had a headache (there is, after all, stuff in there that wasn’t there before), or a tummy ache (ditto), or the wounds are uncomfortable, or he’s just really bored of being with us at home. Not fun. But if someone told me pre-surgery that Sam would start at school two weeks later and be largely cheerful (or at least not miserable), I would have taken it.

He’s now done two weeks and he isn’t just putting up with school, he is really happy. As we walked in on the first day, Sam was all smiles. He has loved school thus far and he knew he would enjoy it, and he was right. That is partly because he likes learning and the variety of a school day, and partly because it’s an excellent school. James and I were far more nervous than Sam, but the staff are so obviously capable, receptive and skilled that we have had no choice but to happily leave Sam there and go for lunch in Clerkenwell or take Eli to the Museum of London, again.

I’ve described before the importance, and marvelousness, of one’s disabled child going to a really good school. We have been fortunate enough to find two. Sam has moved schools because we, and the professionals working with him, felt he would benefit from more specific and specialist input so he has moved from a school for children with a range of special educational needs to a school for physically disabled children. He, and we, loved his previous school and were sad to leave. We all made very good friends there and Sam was lucky to be taught and supported by lovely, skilled people for two years. Saying goodbye to them all involved a lot of weeping, for once not just by me.

As part of leaving, Sam got his last school report. We spend a lot of time reading expert reports about Sam that are, necessarily, factual and focus on problems. Sam’s report was the exact opposite of this – hundreds of words of enthusiasm and celebration. It was a joy to read and was written evidence of the can-do attitude of his lovely teacher. Forgive me as I quote some of my favourite bits – comments that could only be made by people who have taken time to really get to know Sam and see past the immediate obstacles to communication and learning:

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‘Sam is an extremely popular member of class and throughout the school community. Children and adults are drawn to Sam’s fun friendly nature and positive attitude.’

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 ‘One of Sam’s many lovely qualities is his empathy. If another pupil receives praise or is celebrated for an achievement Sam will start to beam and become very excited.’

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 ‘Sam has fantastic understanding of the spoken word and can communicate with adults using his communication board, his PODD book, symbols or just by gesture.’

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 ‘Sam has really flourished with phonics activities this year, and with the continued support he receives from his family he has excelled in this area. Sam can now recognise a variety of letter formations and can confidently identify their sound. For example when presenting Sam with a choice of four sounds: ‘igh’, ‘th’, ‘er’, ‘ue’, Sam can confidently read the letters and communicate this by eye pointing.’

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 ‘At the beginning of the year Sam required support at the trunk to sit independently. Now in soft play when he is propped up against the slide he can sit cross legged completely on his own for up to two minutes! This has been such great progress and we are all really impressed with how hard Sam works in these sessions.’

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We are incredibly proud of him, so pleased he’s had such a brilliant experience of school so far and so thankful for such talented teachers and assistants. What a geek! Like mother (and father), like son.

 

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Brain surgery

Sam had brain surgery last week. It was an elective operation, in which electrodes were inserted into his brain. These are connected to a battery pack about the size of a cigarette packet on the right side of his tummy. The idea is to try to reduce his dystonia and therefore give him a bit more control over his body. It’s called Deep Brain Stimulation.

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Sam spent a week in hospital after the surgery. He was discharged yesterday and is now back at home – recovering well but still in discomfort. We are relying heavily on paracetamol and films.

We chose for Sam to have this surgery. We entered in to it open-eyed – we knew the risks and we knew it would be hard. We hope that the benefits of reducing Sam’s dystonia, and therefore his disability, will outweigh the pain and disruption of the procedure. We thought hard about whether the gains would be enough to compensate for Sam never again being able to trampoline (in case the wires that now run down his neck snap), and not being able to swim for three months.

Having a child go through major surgery and recovery sends you into a hole. The intensity of the emotion and the level of care required is enormous and exceptional.

It feels all wrong to spend your child’s life taking so much care over who looks after them – we have never previously left Sam with anyone except trusted family, carefully chosen carers, at nursery or at school – then leave them with a group of doctors and nurses who you have only just met, and who are going to do unthinkably invasive things to him while he is unconscious. These places are so weird – full of people for whom this is all in a days work, while James and I are reading Sam knock-knock jokes and trying to convince him and ourselves that everything is going to be okay.

The six hours that Sam was in surgery felt like being in the eye of a storm. Everything calm and controlled, but filled with anxiety and waiting for the call to say he was in recovery. I tried not to dwell on the thought that if Sam’s brain was damaged for a second time I would never forgive myself. Then the call comes, and in we go, and the storm sweeps across us all.

We only really emerged from the swirl of hospitals, and cannulas, and exhaustion yesterday. Here are a few thoughts as we come into the light.

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When Sam has been in hospital previously, we only had one child and this time we had two. This made a bigger difference to our ability to cope than we expected. Someone who knows Sam well needed to be with him all the time – partly because he was sensitive and sad, mainly because he can’t communicate with anyone who doesn’t know him beyond crying. I had created a rota on a geeky spreadsheet to ensure there was always someone with Sam and someone with Eli, but the reality of organising it was so tricky.

The easiest solution was to largely have me or James, or both of us, with Sam and for Eli be with family and carers. We knew he’d be confused and annoyed, but hoped new Playmobil pirate sets and promises of cake would get him through. And it did for the first few days. Then, he realised that he hadn’t seen his dad for three days and Sam wasn’t at home. He didn’t understand why last week he’d been on holidays with the four of us hanging out all day, but now he never saw his parents in the same place, his brother was in this mysterious hospital place, and we kept trying to offload him on other people. He was so confused. At one point the fact that both of our kids were struggling nearly broke me. Things improved a bit once Eli started visiting Sam at hospital, realised he wasn’t too far away and just looked like Mr Bump, and found out that hospitals have not only play rooms but also cafes that sell croissants.

I am raw to Eli’s feelings about all of this. He shows such insight and accommodates so much. On the day before surgery, he asked where we were going to be while he was staying with my sister. We explained (again) that we would be at the hospital with Sam, that he was having brain surgery, that we hoped it would help Sam control his muscles. His first question was, ‘Will Sam be able to eat after the surgery?’. No, he won’t. But the three-year-old is asking all the sensible questions. Be still my heart.

Pulling together

I’ve said it before, I’ll say it again. Our family is kept on the road by us all pulling together. For eight days I have spent up to 15 hours in a small room of a hospital. Sometimes with company, largely on my own with Sam, reading The Twits for the sixth time and eating fondant fancies for lunch because I can’t leave Sam for long enough to buy a sandwich. It’s not been that much fun.

But being James has been quantifiably less fun. James did six night shifts with Sam in a row. We were meant to alternate but the kindness of my husband and the frequency of my tears led to him doing every night. These were nights of Sam being miserable, almost no sleep, frequent observations and intravenous antibiotics. This last week, our family has been kept together by this man.

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Sam and James developed an amazing kind of symbiosis from spending all of these hours together in adversity in a small room. By the end of last week James knew what Sam wanted or needed from the smallest facial gesture or the subtlest wriggle. He knew when Sam wanted to be held, or how to get him to sleep. Oh man, these boys of mine.

Meanwhile, our families have been at our beck and call. My sister Maddy has once again proved that her capacity to sit in hospital rooms for hours is one of her most valuable skills (photo below of Sam and her just before his surgery). Along with looking after Eli for days despite him almost continually insulting her.

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It will be okay

So here we are. We’re on Day 9 and Sam is well as he could be. It’s all held together with Calpol and constant entertainment, but we’re home.

A few weeks before the surgery we had a party to celebrate our new house and summer. It was our normal combination of friends, prosecco and semi-naked small children. Uncle George brought his decks and at some point before bedtime he played this song: Can’t Do Without You by Caribou. James and I went to Latitude Festival in July and we arrived, via horrific food poisoning, an emotional final assembly at Sam’s school and six hours of Ipswich traffic jams, to Caribou playing this song on the main stage. I love it.

As we then danced to this song in our garden at our party a few weeks later, with James holding Sam and Eli jumping around, I had a moment. A little bit of clarity that Everything Is Okay – Sam is happy, our family is amazing, and we can all dance together at a party with our friends on a summer evening. I imagined looking at us from the outside and thinking ‘they look happy, that little family of four’.

As I sat in the hospital room when Sam was in surgery I listened to this song. As I stood in our kitchen at midnight during the last week, having just returned from the hospital but needing to make Sam’s meals for the next day before I could go to bed, knowing that I needed to be up at 6.30am to get back to Sam and James, I played this song. I imagine that many people associate this song with taking drugs on dance floors, but it’s become my anthem of Deep Brain Stimulation. I absolutely cannot do without my little gang of boys, we just need to get through this little patch of discomfort.