Blogging our way through CHD
In her second NICU Awareness Month post, our guest blogger, Vicki Cockerill, tells us how writing and blogging helps her through her son, Elijah’s, CHD journey. She also has some invaluable advice about setting up and managing a blog:
When we first got the diagnosis that my one day old son had Tetralogy of Fallot I was stunned. I never had even heard of CHD at this point and not one of my friends or family had gone through what we were then experiencing.
I felt so lonely, so angry. Why were we having to go through this? A few months after Elijah had a successful surgery, I decided to write a letter to all of the other parents going through what we were. I emailed it to a few friends who all said I should put it online.
Someone suggested that I publish it via a blog but I knew nothing about setting it up, and was fairly certain no one would read it. But, if it helped just one person, it made just one person feel less alone and when I thought back to sitting in the hospital scrolling through medical threads perhaps my experience would help someone out there. It also helped me, it began to be my therapy with processing everything, all of the conflicting feeling suddenly rationalised in words on paper.
A friend came and set up a simple blog where I begun to publish everything I had written. Slowly it got out via friends and family sharing it on social media. I began to connect with other heart parents via social media and found a few had their own blogs too.
I will be completely honest and say up until I started my blog I had no technical knowledge, and no idea about social media. All I had was my honest thoughts and feelings. But, I had such a passion to share what we had been through, to begin to educate and raise awareness of CHD, to reach all of the parents who like me sat on the bed feeling so alone.
The best part of starting my blog was the opportunity to connect with other heart parents, to be part of their journey to share the ups, the downs and to feel as though someone actually understands what you are going through.
If you are struggling with feelings after diagnosis, surgery or a tricky appointment I would highly recommend writing it down. It doesn’t have to be published online, but once you see those words on the page/ screen it becomes easier to digest, to accept or rationalise. Or seek out some heart blogs to read.
If you did want to start a blog here are my top tips:
1. Set up yourself an account via Blogspot or WordPress. Normally you can register with just an email address and it is free. They are fairly easy to navigate and customise with different themes.
2. Start at the beginning, and go from there. From my first ever blog post to now, I have written about anything and everything surgeries, fears and even property development!
3. Get friends and family to share on social media. If you do want to get your blog out there ask them to share it via Facebook, Twitter etc it will soon begin to filter around.
4. Don’t get hung up on stats, ask yourself who are you doing this for? Yourself? To raise awareness? Whether 1 person or 1000 read, it remember why you are doing this and don’t get hung up on the numbers.
5. If you don’t want to manage your own blog but want to share your story ask bloggers, charities etc to share your story many will welcome parent experiences.
Social media whether you love it or hate it has revolutionised the way heart parents can support one another. I keep in touch with heart parents from all across the UK, US and even Australia.
Writing and reading heart blogs has made me feel less alone and more understood like no other way. Just reading one blog post which describes how you feel, to know that someone else is going through what you are really does make the world of difference.
If anyone did want any advice on setting up a blog or anything else, please do get in touch as I am happy to help.
Find out more about NICU Awareness Month here.
Vicki Cockerill is a Freelance Content Writer and NICU/CHD mum to two boys, she authors The Honest Confessions Of A NICU Mum Blog, co-founded the @KnackeredandNorwich Social Club and campaigns for NICU and MMH issues. You can contact her via her blog or social media;