Following Annabelle’s diagnosis, I was lost.
I have always been that person who needs to understand everything I am doing to be able to do it. How could I parent a physically disabled child with no understanding of how to support her? I couldn’t.
I didn’t know what to do or where to go for help, so I did what most people do when they need answers and asked Google. I researched late at night for hours and hours for months and months. ‘What is cerebral palsy?’ ‘What therapy is available for cerebral palsy?’ ‘Will my child walk?’ ‘How can I support my child?’ and the list goes on. There was so much information to digest.
I set up an Instagram page in January 2018, two months after Annabelle’s diagnosis and a Facebook page shortly thereafter. I searched for other cerebral palsy families on Instagram and connected with as many as I could and what a relief to know we weren’t alone in this after all, there were other parents out there that had already experienced what we were feeling.
I quickly began to get ideas from their posts ranging from equipment recommendations to therapy ideas. I also joined as many cerebral palsy Facebook groups as I could find, the more groups I could find, the more information that was readily available for me to learn from.
The pages quickly became a place for me to hide behind when I wasn’t comfortable talking about Annabelle’s diagnosis. I didn’t want to tell everyone we knew individually as I still didn’t know enough about the diagnosis or her future to answer all the questions that would follow.
Once we had told our immediate family and friends, we then shared the pages with our extended friends and family so that they could understand a little bit about how her life was going to be a little bit ‘different’ for Annabelle going forward.
For a long time, I couldn’t say the words ‘cerebral palsy’ without my eyes welling up so communication via social media made it that little bit easier.
I began sharing photos of what we were doing at home to try and help improve Annabelle’s limited mobility and the photos of her in her therapy sessions which took place numerous times a week. Writing about what Annabelle’s day consisted of, for family and friends to read, meant that without me having to explain to several people, everyone was able to follow our posts and have a greater understanding.
Following others on a similar journey really helped me to come to terms with Annabelle’s diagnosis and for that I will forever be grateful.
Other cerebral palsy families began to follow our pages and we built up our own community.
I want our social media presence to also be something that will help others, so I share the positives but also the challenges we face on a daily basis as well as recommendations and home therapy ideas.
There is always going to be other parents out there that are at the point of diagnosis and searching for other families to try and relate to and for me, if they stumble across our pages and feel less alone or are able to learn something from us then that is a massive positive to us having a social media presence.
Social media is often seen as negative but for us, when we have a question, need advice or simply want people who understand to celebrate a success with us, there is an army of people right there waiting to support and celebrate with us!