It’s this time last year that we moved house. We moved from our rental home that had served us well to our house that we had bought, renovated (goodness, still renovating…) and were desperate to get into, to start making a life. So it’s also about a year since we submitted our saliva pods for the DDD study. I know this because…
Well, to go back to the beginning…
When we realised that Small wasn’t developing as he should be we – like every other set of parents before us – ran the gamut of testing available to try to find out what was going on. There was an MRI (my tiny, tiny boy in that big machine), blood tests (he shouted his way through these) and lumber punctures (didn’t like these either). Not to mention much prodding and discussion by a variety of consultants all of whom, without exception, need to learn a better way of saying: ‘Sorry, we don’t know what it is, but we think you’re stuck with this situation for life’. At the end of these appointments is Genetics, the last-chance-saloon of answers. We duly got more blood out of our little boy but still nothing. At this stage, DDD was mentioned. It stands for Deciphering Developmental Disorders and is, in essence, an in depth study of the DNA of children like Small, to try to find answers. We agreed to join without hesitation.
However, when the test arrived – it’s one you do at home by spitting into a tube – we looked at it sideways, our eyes sort of slid over it as if it wasn’t there and, as if by magic, it ended up on the top most shelf in the lounge. Staring at us. We could not do it. Somehow by the three of us submitting our samples it was turning Small into a project and making the whole surreal, never-imagined situation – testing for a Thing – very real.
It was moving house that gave us the impetus to complete it. The thought of taking this package to our new house, unfeterred by those awful early months’ memories, was worse than finally just getting on and doing it. As it turned out, not so tough. OH decided to make it a competition (who could fill their spit tube quickest…) and Small co-operated wonderfully. Off it went in the post. Shazamm, out of my life. We won’t talk about it, it Never Happened.
But occasionally I am side-swiped by it as I see other people wishing for results or receiving them and being assaulted by all sorts of new or buried emotions and I wonder if we really want a diagnosis at all? I know it would be useful for box ticking, a handy short cut to answer ‘What’s his condition?’ and give us that prognosis that would, no question, make life more plan-able, not to mention help future parents but, in a funny sort of way, I quite like that Small is an anomaly. I like that he can surprise us, I like that there are no boundaries, no expectations. So although I am now wondering if our call will come, I don’t mind if there isn’t an answer.
What’s his condition? Small has…. Well, Small has ‘Small’. Where’s the box for that?
I’m outside, on a boat? Brilliant.
More information on the DDD study is here: http://www.ddduk.org/intro.html