I haven’t posted anything Clara specific in two months. I’ve been quiet. And that’s not for lack of thought.
A lot has happened – Clara has gained so much confidence in learning to walk. She’ll often make it from one room to another before dropping down onto her bottom – a HUGE change for a girl who wasn’t walking and had the potential of physio and other medical professionals lurking in the shadows. She confidently declares “Mama” or “Dada” or, the new favourite, “No” which has become “Noooo….. no way!”.
We had a fantastic visit from Clara’s hearing support lady who was thrilled with her ability to communicate, we’ve been back to audiology where the consensus is Clara has mild hearing loss at a lower pitch but that could be down to glue ear or could be her auditory neuropathy, we’ve seen incredible differences since going gluten free, we’re ruling new foods in and out all of the time… the list goes on!
The truth is, Clara is doing very well. Very very well – I couldn’t be prouder of her if I tried.
But Clara’s identity was stolen a few months ago: Russian fraudsters took photos of her in hospital and created an Instagram profile asking for money to be donated to support their child with cancer. It was horrible. I felt horrendous – I’d put Clara’s photo and story out there (to inspire other families it will be okay) but without second though that they might be misused.
So the truth is I never quite got over that. I realised it was likely just a bot – as after lots of fighting with Instagram (and having to prove Clara was “mine” with a photo of her holding her birth certificate), it got me thinking. Clara isn’t an object – she isn’t owned by anyone except herself.
I’m now not sure how comfortable I am sharing the ins and outs of her personal life story without her having a say. I’ll continue to share key medical milestones as I know that when I was researching what life with short gut meant, it was crucial for me to find that my baby could have a “normal” life.
I’m not sure what this means for the future of this blog, it’ll stay for now until I decide down the line – maybe until Clara can tell me what she’s happy with, when she understands the importance of this decision.