I’ve often talked here about the future, the uncertainty of it and the fear of that unknown. I’ve had cause recently to think about the past. I was completely stunned and delighted this week to find out that this blog has been shortlisted for a MAD Blog Award. One of the things that surprised me was that I found myself immediately self-conscious about people actually reading it!! When I first started blogging it was for cathartic reasons. It helped me to commit to record somewhere, what was happening to us when we were first coming to terms with having a baby with life limiting disabilities. It helped me to organise my own thoughts by explaining them to others. Since then the blog has grown with us. Hosting the stories of achievement, heartache, frustration and utter joy which have unfolded along the way. Until this week I had never sat down and read it from the beginning.
Once I had got past the fact that my use of apostrophes is truly terrifying (and my word don’t I use a lot of brackets), I got lost in the memories. It’s amazing how easy it is to forget what we were told at the start of our journey and what we expected of Mojo’s life. It’s surreal to go back to a time when we were just starting to work with Physio and Portage and all of Mojo’s abilities were just hiding there waiting to be discovered. A time when communication with her was very much a one way street lined with instinct and guess work.
I laughed out loud at the use of the term ‘Paediatrician brain experts’ in my first ever post because these days I can rattle off diagnoses, stats, medications, doses, test results and clinicians like an extra on Grey’s Anatomy and I’ve caught one doctor using Wikipedia to confirm what I’ve told him (a non-Neurology specialist in A&E before you worry too much, but it did happen!).
Then while I was reading, Mojo, who was sitting beside me watching Willy Wonka and the Chocolate Factory (original version) started swaying along to ‘Pure Imagination’ and I was hit head on by a suddenly vivid memory that I didn’t know was there.
The day after Mojo was born, when all the family, nurses, doctors, students, cleaners and passing dignitaries who had been in to marvel at the miracle baby had gone and even my husband had gone home to get some sleep. It was just me and Mojo for the first time. We were in a side room completely alone and we stared at each other silently. After a while she started to cry and knowing that she was fed and clean I was out of ideas as to what to do. I reached for my pre-baby playlist on my phone and lovely Alfie Boe sang ‘Pure Imagination’ to us both and Mojo stopped crying. I played it again and again and again that night, until my battery died. How could I have forgotten about that for this long?
‘Anything you want to, do it.
Want to change the world?
There’s nothing to it.’
The final thing that was very evident during my indulgent retrospective reading was my pride in her. I am always proud of Mojo, I am proud every single day of her determination, her strength, her achievements, her capacity for love and her bloody hard work. I would have been proud of her even had she never hit a single milestone. I am proud of her simply for being her. This week though, embarrassed as I am to admit, I have allowed myself to be a bit proud of that terrified woman in August 2011 who reached for her computer and started to write.