This year Cleft Awareness week is May 6th to 14th. It's an annual national campaign from the Cleft Lip and Palate Association to raise awareness around how cleft lip and palate affects people and their families.
This is something that we know from personal experience as our now 8 year old sold was born with a unilateral cleft lip and palate. Last year I drew a comic about our experiences as parents when our son was born with this diagnosed cleft. I thought that as someone who loves to doodle drawing a comic would offer a different perspective on our story rather than a blog or video.
This year when CLAPA asked if I wanted to do anything I thought hard about what I could contribute when not much has moved from last year. Indeed we are in the calm before the storm when we know we have another big surgery coming (a bone graft) and the scary letter is lying on the kitchen counter, but it will be a few weeks before the appointments and clinics for that start.
I'll admit that even though it could be a while away I am quite anxious about the bone graft. It is a completely different kettle of fish than the two surgeries our son had in his first year. They were stressful enough, but this time our son is old enough to be aware of what is going on as well as a potential longer absence from primary school which up to now we've avoided. If it is not too terrible I would like to document the bone graft experience in a future comic, but we aren't there yet.
So I went for a more general strip reflecting our experiences as a family 8 years on from my son being born with an undiagnosed cleft and also what it means for a face to be 'right'.
I love drawing and am trying to get better at drawing caricatures and part of that process is to identify what is distinctive or unique about a face, exaggerating some features in order to get a 'likeness' or something that brings out the character of the person. However kids (and adults) don't like to be seen to be different and sometimes society isn't kind to those who look or sound a little or a lot different. I want my son to be comfortable in who he is, but not defined by it. I want society to accept people for who they are without judging them by their faces.
However fitting everything into one page was a stretch so there are some extra points worth making:
- Every family's experience with a child with a cleft lip/palate is different. I consider us to be lucky in that although it was undiagnosed we had good support almost immediately and our surgeries were successful. Other families may take more than one surgery to repair the palate (roof of the mouth) for example.
- Not all the difficulties are down to appearance. The issue of cleft lip and palate is not merely cosmetic/looking different it causes lots of other problems from difficulty breast feeding (we couldn't), development of speech (we had to have speech therapy for a while), hearing issues, 'glue' ear and many more.
- Not everyone in our family lounges round on the couch looking at tablets all the time (maybe just 80% of the time).
1 in 700 babies are born with a cleft lip and/or palate your can find our more about it here.