Those early few days following ‘diagnosis day’, after we left the hospital with an internet printed booklet on all there was to know T9M related, I was going through so many different emotions. In fact I remember being strangely upbeat and positive, as long as I didn’t talk about it. I was firmly in denial and almost too scared to do my own research. After all Dixie was still a newborn baby like any other at this point.
I searched T9M on Facebook and came across a closed group. So many times I went to click join then changed my mind at the last minute. It was three weeks of feeling positive one moment and crying in the shower the next, when I finally clicked on that button. I was desperate for Dixie’s diagnosis to be kept quiet but I needed somebody to listen to me. Someone who understood…and there was my first ray of sunshine.
This Facebook group absolutely changed my perception of Dixie and my ability to be the best mummy for her. They were there for me in the times I didn’t even realise I was broken. I would post statuses or questions completely honestly for the first time, and would have tears rolling down my cheeks as I read the replies. It wouldn’t matter if it was day or night, there was always somebody there. People, total strangers, taking time out of their busy days/evenings/nights to say something to lift me up. To tell me they’d been there, and my feelings were normal and the future could be bright.
And it didn’t end there. A mummy at a massage group at the hospital, Dixie’s bedmates mummy when she was in the hospital, the mummy who replied to my netmums plea and my Tuesday girls. I just kept meeting these inspirational and wonderful people who have all become important to me in one way or another.
These amazing parents helped me gain confidence. Confidence in becoming the best mummy I could be for my girls, being Dixie’s biggest advocate and finally talking about her openly. I started joining more groups online, coming across blogs following the smallest people with superhuman strength, and meeting more inspirational parents. I finally realised there was a whole other world out there and that we’re not alone. And we never will be.
And to my T9M parents, you have done this for me. I don’t know where I’d be if I hadn’t clicked that join button. Thank you!