02.05.16

It’s our daughter’s birthday this weekend. We are fairly relaxed about it after all these years though it’s always a big day for us; she will love the attention and when she sees the cake and candles she will be very happy. She’s home for the next few days and we’re looking forward to spending familiar family time together again.

It’s hard not to think back to all those birthdays which didn’t quite work out as we’d planned – and of the cancellations we’ve had to make, especially in recent years, as her health has become problematic and unpredictable. Our plans nowadays are always loose. We will celebrate one way or another, somehow. And our girl’s special friend is hoping to take her out for dinner, or failing that, at least hang out with her and perhaps watch the inevitable dvd. She will enjoy that.

A couple of years ago they went to see Scooby Doo at the local theatre. Such a thoughtful and touching gift that really hit the spot. It was a great success and much fun was had. The programme which they brought home from the show has provided much pleasure and amusement ever since and is still a very popular choice for page turning and scrutiny. Present giving can be an odd experience, especially if the giver is new to our girl. In our world delayed gratification is common and presents can take an awfully long time to be opened. Sometimes (usually) help is required. Last year she was given a beautifully hand-crafted sensory bag by a dear friend, full of specially selected pictures, objects and materials. It stood against the living room shelves for several months before exploration began. Some things are worth waiting for.

It was really important for us to mark our daughter’s first birthday with a big party, lots of children, friends, a bouncy castle, plenty of food and drink – and a clown cake. I don’t remember if we had candles or if we sang Happy Birthday but I suppose we did. We knew then that it might be the only time we would feel like celebrating in such a public way, unencumbered as we were then by diagnosis and hundreds of appointments, and before the gap widened ever increasingly between our girl and her peers, and “special needs” became our norm, our reality.

We don’t see many of those invited guests now, in fact only a tiny handful. Our worlds grew so far apart in the ensuing years, and things rarely turn out as we expect them to, do they? I remember one year arranging to meet a couple of those friends at the zoo as a birthday treat. We arrived very late, having been up most of the night trying to get our girl to sleep. We were shattered but put on brave faces and tried to be cheerful in honour of the auspicious day. Our daughter slept soundly throughout most of the outing and when she did wake up, turned away from the animals, uninterested and uninspired by them. It was the people she really wanted to look at and engage with. If only we had known.

We’ve just had a call. The dinner date has been cancelled as the special friend is not well. Another time then.