CHD and what it means 


http://www.scribblesandcrumbs.com/2015/01/12/10-things-you-need-to-know-about-congenital-heart-disease/
I read this on Facebook and it brought tears to my eyes. It’s a re order that CHD children and babies are so incredibly special. They all share that little faded scar down their chest known as a zipper scar. 


Sometimes it’s hard to remember that little scar inadvertently saved my little boys life. It’s a scary thought. It’s getting incredibly close to his heart anniversary. And I start thinking back to the scariest and most worrying time of my life. I’m grateful he’s still here more then anyone will ever know, I look at that scar and remind myself of what he went through and realise I’m so incredibly lucky. Many CHD mothers haven’t been so lucky they lost their little angels to something that couldn’t be defeated. I am reminded every day of to struggle he’s had over his life and he’s only nearly 16 months. I feel so envious and jealous when I see younger babies crawling, rolling over and walking. All the things he could have been doing by now if it weren’t for his heart defect and his open heart surgery. Every little milestone not important to anyone else is huge to me. I know some people don’t get it and they don’t share my excitement. My baby boy stood unaided for like 5 seconds today something that made me so incredibly happy and proud but who do I tell? Why share it? It’s not a big deal to them like it is to me. 


It’s a lonely world of the possibility of a cough being a chest infection rather then just a cough, infections being picked and treated asap, its infections every few weeks or months, it’s trips to a cardiologist once a year. Physio every few weeks and people asking if he’s crawling yet. This is easy compared to what it was this time last year. It was weekly sats checks, monthly  hospital visits and weekly weigh in’s on top of everything else. Some parents don’t know how lucky they are have to have healthy children they take it for granted and ignore their kids in favour of mobile phones and websites and sitting and chatting rather then interacting with their child. Sometimes I wanna scream it to the top of my lungs everything my little boy has been through but neither of us need pity. I don’t want people to pity him and ask questions which is why I keep it quiet. 


That article published last Sunday I’m thinking and hoping no-one I know from baby groups saw it. Because once they know it’s out there and it’s staying on there. They ask too many questions as it is and they don’t know anything. I like my life being private. Other shout about their problems I choose to blog. 

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Author: always over thinking things

I'm 33 years old,married and I'm a full time mum to 2 boys. My eldest is 6 and the youngest is a year old. My eldest boy is on the autistic spectrum and my youngest is 2 and has a congenital heart defect called tetralogy of fallot. My blog is about my children, about me and my way of dealing with the life I've been given. It's a way of expressing my emotions and feelings through words. This is done anonymously as I want to keep myself away from people who don't know what's happening in my life.

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