Double Digits
In September, Sasha turned 10. It occurs to me that it is no mean feat to have made it through a decade when the doctors told us on his second day of life that they really didn’t know whether he would survive. In addition, we have not only made it through but also, somehow, thrived. In the early days it seemed impossible that life could carry on. I remember vividly the feeling that I would never be happy again. We were exhausted with the sleep deprivation that so often comes with having not just a newborn baby but a baby with significant brain injury. Our nerves were worn by the relentless crying and our hope for the future was non existent. I feel no shame in admitting these emotions as I challenge anyone to experience the absolute nightmare that was Sasha’s first year of life and not feel all of these things.
Somehow we plodded through that first awful twelve months and by Sasha’s second birthday I was pregnant with Gabbie. Fast forward to his third and he had settled hugely, the high pitched cry of his baby sister forcing him to desensitise to noise very quickly! By the time he had celebrated his fifth birthday we were expecting Florrie and life seemed like it could be good again. Half a decade had passed and we had adopted the mindset which has stayed with us ever since. You just have to crack on. As I say to the many people who say they ‘don’t know how we do it’ (apart from that I wasn’t aware we had a choice, otherwise I would have signed up for that instead), you only get one go around. And it just doesn’t seem good sense to spend the whole of your life feeling sorry for yourself. Sure, we’ve ended up with plenty of things that we would certainly not have opted for. And yes, there are still times that life seems fairly overwhelmingly awful. But for the most part, I would say we are probably as happy as the next family.
And so with this attitude we enter Sasha’s second decade. He decided he wanted to mark the occasion with a magician party at home. Now parties at home are about as appealing to me as a lunch date with Nigel Farage so I was not initially on board with this plan. But he was insistent that this was what he wanted. (It is at times like this that I am sorry we worked so hard to encourage his independent communication. Imagine the possibilities. ‘Sasha would like to have a meal at Chapter One for his birthday.’ But no.) And so I resigned myself and sent out the invitations. It was, perhaps naively, after this step that I thought it would be best to tot up the guest list. Given that Sasha’s friends have a variety of complex needs, there are no drop and go parties so parents had to be included in the head count. As we socialise with lots of the families, siblings were also invited. And then Gabbie insisted that she should also have a friend there; a sentiment which was quickly echoed by her sister.
When I did the final count, I was shocked (and somewhat horrified) to discover that we were expecting around 60 people to descend on our house. When I mentioned this to Martin, he looked entirely unperturbed, as those who know him well will believe. Nothing I said seemed in any way to impress upon him the gravity of the situation and so I was left to panic on my own about the logistics of fitting that many people (including, I might add, a significant number in wheelchairs or walkers, which tend towards the bulky) into our living room. I decided that the only thing for it was to serve alcohol during the party in order that the guests became friendly enough with each other that they didn’t mind being in physical contact for the duration of the event.
Luckily the day dawned bright and full of sunshine — Sasha’s birthdays have always been blessed with good weather (perhaps a small apology from karma for the decidedly un-blessed day of his birth?) and we opened up the bifold doors into the garden. The guests began arriving and, apart from a brief moment of panic where I felt that we might need to start turning people away due to lack of space, the party went beautifully. Entertainment was provided by Uncle Mac, a entirely un-PC magician who we had thoroughly enjoyed watching the previous Christmas. It turns out that our living room is just the right size for 60 people, with eight wheelchairs and a large walker among them, and everyone settled down to watch the show. Uncle Mac was as funny (and slightly rude) as we had remembered and I’m not sure whether the kids or parents enjoyed it more. Certainly one of the dads informed me that he would be requesting Uncle Mac’s presence at his own birthday next year (although he and I had both enjoyed a couple of G&Ts by this point so I will need to reconfirm with him at a later date). The only slight mishap was that, in a fairly epic fail of parenting, we had forgotten to pre-warn Uncle Mac of Sasha’s feelings about ‘happy birthday’ — which are probably best described as extreme unhappiness, bordering on hatred, with a dose of fear mixed in. Uncle Mac led the crowd in not one but two renditions of Sasha’s least favourite song in the world, but they say what doesn’t kill you makes you stronger.
After eating a typical party tea (consuming copious amounts of crisps whilst studiously avoiding the token cucumber sticks), the party goers began to depart. I have a bit of an issue with the pointless and wasteful nature of traditional party bags so for some time now have furnished guests with favours instead. In keeping with the magical theme of the party, this time we sent everyone home with a star shaped night light — along with apologies in advance to the parents for the extortionate amount of batteries which would inevitably be required. After saying goodbye, we opened Sasha’s presents (his sisters are always excellent at ‘helping’ him when gifts are involved) and it was lovely to watch how much he enjoyed seeing what his friends had brought him. There were so many lovely, thoughtful things and it gave me such a warm feeling inside to know that, despite everything we thought back in the dark days, Sasha is happy. He has wonderful friends — people he genuinely likes spending time with and who like spending time with him. He has reached the previously unbelievable point of actually enjoying birthday parties. Despite the bad times, he has taught us so much and helped us to grow.
According to Bill Gates (and, let’s face it, he’s a guy that is worth listening to), ‘most people overestimate what they can do in one year and underestimate what they can do in ten years’. And I must say I agree. If you had told me when Sasha was born how severe his disability would be, I would have unequivocally replied that I could not do it. Yet here we are. We have survived. More — we are happy. I wonder what the next decade holds.
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