I started this blog less than two weeks ago in the hope that one or two families in the same situation may come across it and find some of our experiences helpful. I had absolutely no idea the response I would get and am still completely overwhelmed!
It wasn’t an easy decision to put ourselves ‘out there’ as we are a very private family, but looking back at how isolated we felt following Lucia’s diagnosis, our aim was to try and help someone in the same situation to feel a little less on their own.
Instead of just the one or two people we thought might read about us, it has been A LOT more. We have had so many amazing comments on the posts as well as a lot of beautiful and encouraging emails from so many people right across the world.
I can’t begin to tell you how happy I am that this blog has brought comfort to some people and actually helped to make them feel like they aren’t all on their own. And the wonderful advice and kind words that I have received from all of the lovely people who have taken the time to comment and email has been invaluable to our family.
And that is what it is all about. When Lucia was first diagnosed we were given no information – and I mean nothing! So obviously we turned to the internet for answers and it frightened the life out of us. It is often so difficult to navigate the internet to find useful information and more often than not you find the horror stories and photos.
I remember desperately searching for positive stories of young children with the condition, someone I could ask my never ending questions to, someone who knew some of the answers, someone who could tell me ‘it will be alright’. But I could find nothing.
So, almost two years later I decided to go for it. To try and be there for other families who felt like they had no one to turn to. Obviously we have had truly amazing support from our own families and we know they are there for us every step of the way – but like us they didn’t have the answers to the million questions that went through my mind.
As I have mentioned in previous posts, finding our Lymphoedema Physio gave us a huge sense of relief (and I am pretty sure I have melted her head over the last 18 months!). She also helped us to arrange a meet up with other families in Northern Ireland who have a child with Lymphoedema – and that afternoon was priceless. It was almost as if we already knew each other and spoke the same language. The kids all played together while the parents talked and it was fantastic. We all gelled really well as we all had the same mindset – yes my child does have Lymphoedema but we aren’t making a big deal of it and they can do anything they want! We have another meet coming up in May which I am really looking forward to.
Through this blog I get the same sort of feeling. The reassurance of one mum telling me her daughter has danced from age 3 despite her Lymphoedema, another mum giving me shoe advice and another how her son has just gone off to university and she hopes he wears (and washes!) his compression!
It is a virtual community where we can all hold each others’ hands, share information and bring support, reassurance and confidence when we need it most. I know how much I have got from this blog already so thank you all so much – and I hope I can continue returning the favour.