Sister Molly

Ben and Max’s sister, Molly, is four weeks old. We have survived a month with three children, something which feels like no mean feat.

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That seemed unlikely after our first family outing one week in, when we made it just 100m from our front door before Max broke the rules about how far ahead he was allowed to go on his bike, we shouted, he started crying, Ben started crying because Max was crying, and we all went home. Since then we have managed a family swimming trip and some less eventful local walks. So we might actually be capable of leaving the house as a family of five.

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Both boys have been unbelievably sweet with Molly, and very tolerant of the disruption and imposition involved in having a new-born sister. Through a combination of James having a month off work, numerous carers and family members helping us out, and a baby that sleeps a lot, we have been able to keep things as routine as we can. Ben has shown once again that he can cope with a lot of change and take it in his stride, while Max has been demonstrating his capacity to be both a kind big and little brother. We have all had a lot on, but we’re doing okay

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We do not approach birth lightly. Ben’s disability is because of problems during his birth and we therefore know too much about the risks of things going wrong and having lifelong implications. Max was ill immediately following his birth and had to be admitted to NICU. We sort of assumed that our third baby would end up in NICU, even though a neonatal consultant took the time to explain to us how (very) likely it was that we would have a totally healthy baby.

One of the people who really understood our concerns about the birth of this baby was the obstetrician who we saw throughout this pregnancy and who had previously delivered Max. She is someone we have huge respect for, whose judgement we trust, and who had successfully guided us through my second pregnancy when we were at our most anxious about having another child.

This time we knew in advance that she would not be able to deliver the baby because the elective caesarean was booked during the Christmas period when she would be on holiday. Another obstetrician would do it, it would be fine, we told ourselves. As we prepared on the morning of the birth, getting in to gowns and talking photos of my puffy face, we were calm but nervous. And then she popped her head round the curtain to say hi. Dressed in jeans and tshirt, she was officially on holiday but had come in specifically to do my caesarean section.

That, there, is an emotional moment: the joy of knowing we were in her hands (literally in my case), that our baby had the best possible chance of therefore being fine, that someone so thoroughly understood how difficult this all was for us and had come into work especially.

And then Molly was born, screaming before she was out of my womb, to be immediately declared, with a thumbs up, totally and utterly healthy by the neonatologist we had demanded be on hand to check. No resuscitation, no breathing difficulties, no-one at all worried about anything. She breastfed immediately and, following the facilitation of the obstetrician who knows we spend too much time in hospitals, we were able to go home the following day. You would not believe how uninterested everyone is in a healthy newborn baby – barely any observations, no-one came to check her overnight. If you hadn’t had experiences like ours you would have no idea of the anxiety and stress lurking just across the corridor in the neonatal unit.

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We have now had four weeks of admiring and nurturing little Molly and she is a delight. Third time lucky, we had a baby who didn’t need a canula in their head, or a tube in their nose. She immediately breastfed and sleeps like a champion (just not always at night-time). We take none of this for granted – it is luck of the draw whether you have a baby that does the basics easily or not.

We have not lost and will not lose sight of what a privilege it is to have her here with us, healthy and thriving. Nor what a delight it is to share this baby girl with these boys of mine. We are all lucky.

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Ben is 6!

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Ben is 6! Like every year, the actual day is full of mixed emotions. While we are joyful that we are celebrating six years since Ben joined us, on the day I am also mindful that this time six years ago Ben was being resuscitated then being transferred on his own in an ambulance to a different hospital, and that our lives changed forever.

But it gets easier every year, as the memories are less immediate, there is more to celebrate and Ben is more engaged in birthdays.

As is now our annual tradition, James made a video to summarise Ben’s year. I won’t post it, partly for reasons of privacy but also because of self-indulgence; while most parents will happily watch a ten minute video of their own child, no-one I know really wants to watch a long video of someone else’s child, even if that child is the subject of a semi regular blog they read. It’s surely the modern equivalent of being made to sit through someone else’s holiday photos.

So, here’s the executive summary. It is unashamedly positive. Let’s ignore the tiresome stuff for now.

In Ben’s sixth year he:

  • Enjoyed ice-skating and went round the rink quite a lot faster than grandpa;

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  • Went down a zipwire, swung from a sports hall ceiling and went kayaking at the Calvert Trust;
  • Did a lot of triking;

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  • Was a lovely older brother to Max, letting him wear his lycra suit and clamber all over him;

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  • Moved house (again – his fourth since he was born);
  • Got a new wheelchair-accessible car (which is great but unfortunately turns out to be one of the cheating VW emission scandal cars…);
  • Got his own eyegaze computer to use at home and used it to tell us knock knock jokes;
  • Went to the House of Commons and met an MP;

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  • Lost four baby teeth, swallowing at least one;

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  • Did a lot of trampolining;
  • Went to a summer playscheme for the first time and made a biscuit the size of his head;
  • Went on holiday to the Cotswolds and Cornwall. Next year places beginning with D. Suggestions welcome;

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  • And last but not least, left one wonderful school and started at another, settling in quickly.

Ben had a lovely birthday. Over the years we have learnt what works and what doesn’t. We are less concerned these days about what a typical six year old birthday party would be like and just do what we think he will enjoy – small family celebrations, lots of presents and balloons, ice-cream cake which he can at least taste if not eat.

If I do say so myself, we have done particularly well with Ben’s presents this year. It’s tricky to think of things he will really like beyond yet more books, but he is really enjoying a puppet theatre where we put on shows for him with hand puppets, a lightbox that we can spell words on, and a teddy bear that will play Daddy’s voice (from Kuwait this week) or anyone else who records their voice via an app. So satisfying when all of the thought I have put into presents he will like pays off.

The coming year will involve more change for Ben, not least with a new sister and another house move. His somewhat relentless life will continue with the usual levels of complexity and endless appointments, but he has continued to prove that he can take it. It feels like he (and we) are more resilient and happier than ever. We will inevitably have some blips. I am certain the arrival of a third child will throw us all off course, he’ll get the usual winter bugs and we will face unexpected challenges. But, but… if I had been able to see how well we are all doing six years on from the awful day of his birth, maybe I wouldn’t have been quite so sad.

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Brothers and sisters

All kids look up to those older than them, and Max is no different. Ben is almost 6, Max is 3 and Max wants to do all of the things Ben does: go to school, go swimming, watch Dennis the Menace.

Max knows Ben is disabled and because chronology is tricky when you are 3, Max wonders whether he will become disabled when he is older. He doesn’t see this as a particularly negative potential development. He wants to know whether he’ll get a wheelchair like Ben’s, or go to the same school when he’s disabled.

There is something bittersweet about our able-bodied son climbing in to Ben’s wheelchair when Ben isn’t using it, about demanding to sit in Ben’s specialist supportive chair to have his snack. I hope it continues like this – Max’s relaxed attitude to disability is how we would all be if we came across more disabled people at school and work.

Over the summer we went to the Liberty Festival at the Olympic Park . It was on one of those British summer days when the rain was relentless and so I can’t say we stayed that long, but they had curated a selection of cultural and sporting events which deserved sunshine and crowds.

One of the activities was a racing track, and a basketball court, with loads of sports wheelchairs for people to use. What an incredibly simple idea, but have you come across it before? Giving people the opportunity to just sit in a wheelchair? There were loads of kids trying to play wheelchair basketball and race along the track. Max was super keen even though the chairs were way too big for him, and off he and Ben went to race (with James pushing Ben). He still talks about it – remembering the time that he got to go in a cool wheelchair and raced against his brother.

I am mindful of this whole business of how you raise siblings of your disabled child. I am pregnant and we expect (fingers crossed, which didn’t go that well with Ben’s birth) another, female, mini-Jess in December. We have thought carefully about this. There are disadvantages to Ben of his parents being spread between other kids, just in terms of time and attention if nothing else – there is less time to model a PODD communication book if another child needs a wee or is in the midst of a meltdown. And there are ever present risks of a sibling feeling like Ben gets the lions share of our attention, of everyone’s attention. Ben’s needs dictate our holidays, mean there are constantly carers in our house, that our lives are disrupted by hospital stays.

Max is also seeing various things I wish he wouldn’t. He recently asked me to teach him how to click with his fingers. When I asked where he’d seen clicking, he recounted in painfully accurate detail an incident a few weeks ago when a lady (who was in a position of responsibility and should have known better) was clicking in Ben’s face as an apparent attempt to distract or entertain him. When James asked her not to, and suggested she speak to Ben rather than click her fingers directly in front of his nose, she got very defensive and we all ended up having an argument. Max was with us and was confused by it all, ‘You and Daddy were very cross, and the lady was shouting, and Ben is in our family’. He thinks people shouldn’t click in Ben’s face, but he likes the general idea of clicking.

We hope all of these potential stresses and strains are convincingly outweighed by the massive advantages of there being more people in our gang. Max loves his brother. He wishes Ben didn’t go to school so that he was at home with us every day. He makes us buy Ben toys so he isn’t left out .

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Meanwhile a chatty 3 year old is a marvellous lubricant in social situations and forces all of us, not least Ben, to engage when it would be easier not to. We do all sorts of things as a family that we wouldn’t do if it were just me, James and Ben. And we all laugh more. We now have to charge the stimulator in Ben’s tummy daily so Max has been comparing Ben to an iPad. Ben thinks this is funny as do we all. (Yes, we overuse screens in our house and Max spends too much time with an iPad – another consequence of being Ben’s brother).

So let’s hope we can produce another one like Max. I mean, of course we won’t. Kids have a habit of being their own people as the two we’ve got have shown. But if the next one is even a bit as accepting then it will be okay.