Tuesday 9 May 2017

It takes a village - Cleft Awareness Week

You never know how many people are affected by something until you are. All around the world, people are connected by common experience, putting friends in touch with friends who can give advice or comfort. It's from these connections, these strands of knowledge and empathy running through humanity, that great things can happen. I don't necessarily mean world peace, or the elimination of hunger (although that would be lovely), but people who thought themselves alone in an experience can find that they are not. That someone knows what they are going through, have been through it themselves, and can offer advice on what worked for them, is a powerful thing.

A saying that is often bandied about, usually by politicians trying to prove a point, is that "it takes a village to raise a child". I think that is true, although instead of the advice coming from the local wise woman and village elders, it comes from friends of friends or groups and connections online.

When we first found out about H's cleft, we didn't have a bloody clue. The first thing we both thought was 'hair lip.' That isn't the right phrase for it, but we didn't know. We'd never really heard of anyone having a 'hair lip' except one girl in high school who we'd rather not have thought about.

Except we were wrong. We knew lots of people who had been affected by cleft lip and palate. Maybe not directly or closely, but they were there. A second cousin of mine. 2 students at the school my brother taught at. 1 at the school his girlfriend taught at. 2 in a colleague's family. The granddaughter of a colleague of my mother in law. Suddenly, within a week or two, we had the email addresses or facebook details of half a dozen people who had been there and wanted to help two expectant parents who were scared out of their minds.

The wonderful thing about organisations such as CLAPA is the network of reassurance they supply. The 'cleft community' (for want of a better phrase) are without exception the kindest, most welcoming, least judgmental community online. Everyone is so supportive and there is none of the 'mumsnet-y' judgemental rubbish that seems to accompany every parenting opinion online. You are all awesome. Give yourself a pat on the back.

It is important to celebrate all that we, as a 'village' do right, I think we also need to shout from the rooftops about what we are doing. 1 in 700 births are affected by a cleft.

That's 8 in my village.
836 in my county.
129 in a capacity Wembley Stadium
Even 2 in my place of work.

That is a lot of people and yet, judging by the comments on ITV's 'Benidorm' this week, it's still a very misunderstood condition.

We are all proud of our kids for what they have been through, our kids are bad ass. They are strong and stoic because its all they have known. It's harder for us as parents and families because we know what could have been. We see what our children go through and we need the support because we know it's not like this for every child.

That's where our 'village' comes in.

We need to be the people supporting the new diagnosis. We need to be the people supporting families who aren't as far along the road as we are, but we also need to be the people talking and educating everyone else so that when their friend goes "my baby has been diagnosed with a cleft" they can reply "I know someone who had that, don't be scared. Talk to them"