Sharing Allissa's Story


I had thought about sharing Allissa's story for a while since I started blogging.  Its very personal but one I am always happy to tell anyone who asks, I do tell it in a very quick and removed way though.  People are usually interested to hear what happened but often worried about asking questions.  Part of my motivation to share her story was also that it might make some new parents going through a similar issue feel that there is always hope and nothing is ever set in stone when it comes to babies, a positive outcome can come from what may seem like the bleakest of outlooks. 


I decided to film the story as opposed to writing it because I felt it was a more personal way to tell it.  I also decided to film the whole thing at once, not to prepare any notes and just to talk.  As a result there are things I missed out things I got slightly wrong which I expected would happen.  What I didn't expect was for the telling of the story and the anticipation of sharing it to people I didn't know to affect me as much as it did.  My husband and I didn't really dwell on things back when they happened we just decided to accept it and move forward focusing on our baby. Telling the story was the first time I had really gone back and thought about what happened in detail and in doing so I found myself dragged back into those early days and how awful it felt.  Helpless and desperate were the resounding feelings I remember, the more I talked the more came back to me.  I struggled with the anxiety of sharing something so personal to a wide audience and was terrified that someone would have something negative to say.  I am fully aware that I am not everyone's cup of tea and accept that negative feedback is to be expected at some point for everyone who puts themselves in a position to receive it.  However, the thought of negative comments on THIS video in particular filled me with dread.  I doubted myself, what am I even doing, no one will be interested in this who wants to hear me talking about sad stuff?!?! It's all such emotional and sensitive stuff, I worried about offending the Doctors and staff who helped her if I remembered something wrong, I worried about how other people would react to the way I reacted and the way we got through it.  As with everything in life there is no right and wrong way to do things.  For me, the world closed down and all saw was Boris and Allissa, no one else mattered to me at that time.  I didn't consider other people's feelings, which is very unusual for me.  I was in survival mode and looking back I seemed very hard.  I wanted to re record it and do it better but I never re record because the result is not natural.  I also wanted to do the story justice and do some simple editing, I REALLY struggled which compounded my anxiety and nerves.  I couldn't edit on my phone because it was so broken and I couldn't work out the trial software I was using by the time I did work it out the trial had expired and it wouldn't allow me to export the clips!  


Watching the clips over and over attempting to edit really plunged right back to those dark days and I found myself feeling incredibly low and filled with sadness.  I decided to stop and just upload, this made me feel immediately better.  I didn't edit the second 2 clips besides cutting them.  




As it turns out all the feedback I have received so far has been supportive and understanding, I am hugely grateful for every single kind word sent our way.  Comments, likes and private messages, they really do mean so much, thank you.  


After I shared the final part of the story when I was yelling at our little miracle for pulling the hat of off our Elf on the Shelf, I received a message.  'Hey, I just wanted to say how much I love your blog! I found it pretty emotional listening to you tell her story. Allissa is an absolute credit to you & I’m so glad she proved us all wrong. It’s lovely to to how she is getting on, thank you for sharing! xxx'  this lady cared for Allissa in the neonatal Intensive care unit and is actually the same nurse who was with us when we were given the news that brain damage had been detected.  We had a long conversation, and I got the chance to thank her again for being part of the amazing team who save our daughter's life on more than one occasion.  She told me she remembered our family and had followed my blog for a while.  She enjoyed seeing how well Allissa had come on and was so pleased she had proved them all wrong.  My heart flipped and I felt so overwhelmed with emotion being able to talk to her and know that she would be able to pass on our thanks and news to the rest of the team and even the Dr who was in charge of her care.  I admitted to her that I don't remember any faces from the unit and told her how happy I was that she got in touch.  Allissa sill visits the hospital regularly for a number if different appointments and so I promised to take her over to the unit to see everyone again.  We visited once before when she was 8 months old because we had raised money to donate as a thank you to the Special Nursery.  The sounds of the monitors and the smell of the soap actually gives me chills but I'd love them to see how great and full of personality she is now and for them all to get a famous Alllissa cuddle/bosie!


A terrifying and daunting task that I could easily have just avoided turned into a wonderful experience that really had a positive impact on our family.  Since leaving my job almost a year ago I have done a number of things outwith my comfort zone and each one has turned out well despite my concerns.  One reason for starting this blog was to fill the gap that work left behind its absolutely done that, I have been able to challenge my self and overcome fears. Another was to allow other people to see our 'normal' either to help other families at the start of their journey or to let people see that its not a miserable life its full of love and fun!  Being able to speak to Fiona, a nurse who, with her team changed our lives by looking after our daughter and keeping here  here with us has absolutely made up for those couple of sad days before I uploaded the You Tube videos!  

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Comments: 3
  • #1

    Thomas and Jamies Dad (Tuesday, 23 January 2018 20:12)

    You have so many brilliant photos. Well done Miss A...

  • #2

    Jemima, Seb's Mum (Wednesday, 24 January 2018 01:23)

    I have met Allissa a few times and never imagined anyone could think she could be anything less, she is such an individual and so personable and engaged with those around her. She is is a credit to both you as well as herself. Your story is so familiar and yet different but just so damn honest and real, every newly diagnosed parent should watch and read your story it is a relief in its fear and honesty. Thank you so much for that. I wish you and your family all the best, much love x

  • #3

    Mrs Madhouse (Thursday, 25 January 2018 15:33)

    Wow, I can't begin to tell you how nice that was to read! Everything you said means so much to me and makes me feel that I have achieved exactly what I hoped for by sharing our story. Thank you so much for taking the time to leave a comment its so encouraging. xxxx