Since 25th September when my husband and I were first told that Frankie would be born with a cleft lip and possibly palate, I have been through a maelstrom of different emotions from shock, horror and devastation to peace, acceptance and ultimately, happiness again. I thought all sorts of things when we were first told the news, cried loads and was very upset at the thought of my boy growing up to be bullied at school because of his appearance. I was bullied at school growing up just for being a bit overweight and wearing glasses, so I know first hand and from bitter experience just how cruel kids can be.
The first few days were a living hell. I couldn’t sleep, could hardly eat and couldn’t focus my thoughts enough to get any kind of clarity. But then I discovered the Cleft Lip And Palate Association (CLAPA) and the more I found out about the condition and what we were up against, and the more I talked to other women whose babies had also been born with a cleft lip and palate, the more the fog started to lift and I know now that it isn’t the end of the world and that much could be done to fix it.
However, yesterday I turned a huge corner when I met a lovely lady in person with her daughter who is coming up to seven years old and who was diagnosed with a cleft lip when her Mum had her 20 week scan. It wasn’t until she was born that they realised she had a very wide cleft palate as well.
To see this beautiful, wonderful little girl sat next to me in a cafe with her Mum was the most amazing thing in the world. She sat as good as gold and did some writing and there was no way I could tell in a million years by looking at her that she’d ever had a cleft lip. I was so inspired by her and I was equally inspired by her Mum who told me all about her journey from diagnosis to where they are as a family now. Her Mum took up running and has raised funds for CLAPA by running half marathons, she’d never been a big runner until she wanted to give something back to CLAPA for all their support and hard work, and found herself a whole new hobby and way of life.
One of the best pieces of advice that she gave me yesterday was prepare for the fact that it will be a cleft palate as well as a cleft lip when Frankie is born. Read up on it all, research things like the different feeding techniques that we’ll need if he does have a cleft palate and accept that he’ll have to have operations through his early years. Then if it turns out to just be a cleft lip and nothing else, all the better. Absolutely spot on and sound advice that I intend to follow. The other thing was that after she shared what happened to her so openly and candidly with me I finally realised that every single thought and feeling that I had since getting the news was absolutely normal, and that in a way was a huge relief.
Some of her photos appear in the header on this blog and also on the Baby and Cleft facebook page – http://www.facebook.com/babyandcleft – and I just want to say a HUGE thank you to them both for meeting me and my husband yesterday and sharing their experiences with us so openly.
I can honestly say that as a result of meeting them both in person yesterday, and seeing how amazing and wonderful the little girl is, that I’ve finally returned to happiness and I cannot thank them both enough from the bottom of my heart. I intend to enjoy every second of the rest of my pregnancy going forward, and I hope that they will be one of the first positive/success stories that I feature on this blog in the near future.