Do you remember those early baby days when you’d eagerly await the health visitor with her scales, or queue up at baby group to get your child’s red book filled in? Stripping off your squirming little bundle and plopping them screaming blue murder on the cold surface didn’t always feel kind but it would give reassurance that they were feeding ok and gaining the right amount of weight.
I did have friends who had worries – babies ‘failing to thrive’ – but Pudding never had that issue. Born exactly on the 50th centile for boys (in other words, totally average) he very quickly headed up to the 91st centile, then the 98th (only two per cent of boys would be bigger) and then off the scale. We used to joke that he’d grow up to be a sumo wrestler.
His height wasn’t quite as impressive – he tended to hover around the 91st centile – but it did start causing me some concerns. Not healthwise at that point. No, it was because he was tall that people often thought he was older than his actual age. If you add in the development delay that was starting to be an issue before he turned three, his behaviour was often much less accepted and understood than it would have been from a smaller child.
On the second visit we had with our local pediatrician, the doctor made the comment ‘but he’s still growing well, which is a good thing’. It didn’t make much sense to me until I went home and looked up that word he’d said – mucopolysaccharidosis. Children with MPS2, which Pudding was eventually diagnosed with, tend to be big at first, but then growth tails off and stops as the waste products in their body build up. Before any treatment was developed, average height for those with the progressive condition was around 120cm (4 feet). Enzyme Replacement Therapy (the treatment that Pudding has been getting every week since he was three and a half) is hoped to lead to a much more ‘normal’ stature.
So maybe that might explain my touchiness on the subject when people who’ve not seen Pudding for a while say, ‘Oh hasn’t he grown!’ or ‘He is getting tall.’ Maybe my grouchy response of ‘No, he hasn’t.’ would be forgiven if they saw this picture. That chart in the red book so proudly filled in through the early years is now just another source of heartache.
I know of course that there are many people out there of short stature who lead perfectly full lives. It’s not his height itself that particularly bothers me. It’s the implications of what it means. The implication of time running out.
Writing that, I’m acutely aware that I’ve never wanted this blog to become one long woe-fest, so I will point out the positives as well. If he was now the size of an average 9 year old there is no way I’d be able to pick him up as easily. He’s still a fairly solid 28kg (4.4 stone) which I can just about manage for short distances, with a careful eye on my back. Mostly though, I don’t feel so bad about continuing to use one of his other nicknames – Bubba. My baby.
Of course, T will always be my baby too, even when he’s grown up and off by himself in the big wide world, but I wouldn’t dream of saying it aloud. Pudding though… Pudding is a special case.