Since having Jenson 19 months ago I have, as all new mums do, become an emotional liability triggered by the most innocuous of things. Well this new (and evidently permanent) ailment of mine has just taken on a whole new life of its own, starting last Friday. Friday was the first day of the chromosome 18 European conference which I attended with Jenson and Matt. From the very moment that we set foot into the hotel lobby, it was like being reunited with a family that you have known all your life but at the same time never knew existed.
We were initially worried about being faced with the realities and truths of a gaggle of little faces that would basically represent Jenson’s destiny. The way they looked, their behaviour, their physical afflictions. Up until now, having never met a real family with a real child with this really rare condition, we were still living in a world of theory and abstract. And dare I say, to some extent in a world of denial. Well I needn’t have worried. These children were amazing.
For the last 7 months we have been repeatedly telling family, friends, clinicians, (strangers!) about Jenson’s condition and diagnosis. Answering the unrelenting questions about the genetics, the problems, the appointments, the complications and the outlook for the future. What an amazing and refreshing feeling to spend a weekend with people who know it all already. Where you don’t have to deliver a biology lesson in genetics, a run down of the weekly appointments, justify why he is still drinking from a bottle, why he isn’t walking, or explain his little quirks.
Not only do these people get it, they recognise it, they embrace it.
How amazing to be able to sit down next to a stranger to feed a crying baby and 15 minutes later, and a measly 2oz of milk, a whole new friendship has been formed and a myriad of new ideas and concepts have been generously departed onto me.
What an experience to sit in an arena of 200 parents listening to an autism expert whose videos have even the manliest of dads in the audience in tears. To be introduced to a little 10 year old girl with Jenson’s exact same condition, who immediately developed an inseparable obsession with him and with whom he interacted, giggled and smiled like he has with no other child.
In a world where we increasingly feel that showing vulnerability is a sign of weakness, and where its easier to smile and stay silent than strike up a conversation, this was an eye-opening and inspiring time for us.
We were all there for our children, but what was the most surprising for me was that we were also all there for each other. The strength and conviction that I have learned about from my new found ‘family’ were the best and most unexpected part of the experience and I will take away so much inspiration from these people.
The magnanimity that the other mums and dads showed me was impossible to translate into words; listening, reassuring and counselling me, in the things that no doctor or clinician could even understand.
Before this weekend we were facing this condition on our own, screaming silently inwards while smiling bravely outwards. Now we have something to smile about.
tetraspecial 