I love looking through baby photos, don’t you?
Those sweet little expressions they used to pull, the chubby cheeks, the memories they bring back…
And there’s the rub. Because the memories can be bitter sweet.
Whilst I enjoy Facebook’s On This Day feature – laughing at the funny things T used to say, or reminders of days out we enjoyed – sometimes it punches me with what could have been.
I might see a photo of the panto we went to a few years ago and realise that Pudding never says anything as clearly now as when he asked ‘Where de moo?’
A photo will come up of a hospital bed, and I’ll be transported right back to those terrible first few months where the only thing that seemed real was the knowledge that I couldn’t escape this nightmare.
Sometimes though the hardest photos of all are those from before diagnosis. When I had never heard the initials MPS. Photos from more innocent days. I look at his so-obviously-Hunters face and think ‘How could I not have known? Why didn’t I fight harder to get his delays looked into? Why did I let the professionals’ dismissals over-ride my concerns over the way he looked and acted? How could I have missed what is so obvious to me now?’
But of course I couldn’t have known. I’d never seen a boy with Hunter Syndrome before. I didn’t know what that baby face with its broad nose and big forehead meant. I didn’t know what all the niggling little symptoms added up to. How could I have done? That’s the problem with rare diseases like mucopolysaccharidosis. You rarely see them.
And that’s why I keep on blogging and sharing pictures of Pudding. In the hope that one day, somebody somewhere will recognise these features in their own child and press for a diagnosis.
I can’t stop them feeling all that pain, but hopefully in the future they won’t be the one looking at happy memories and wondering why they didn’t know.