My daughter. My inspiration, my fighter and THE bravest girl I know. I put a lot of stuff up about our family “oh look another hospital appointment” but I want to make people see how hard having a medically complex daughter is, okay hard isn’t exactly the right word! It’s exhausting, mind numbing, overwhelming, upsetting, too much, impossible. But then it is equally as rewarding. Those tiny little glimmers of hope are what parents like myself cling on to, we see our kids start to do the smallest of things, take Ava, she can’t sit, she’s wobbly and usually lays rolling side to side, but now she’s pulling herself up in the cot, clinging to the bars. She knows what she wants, she’s knows she’s got to get there in her head, but that little body of hers was never programmed to allow her to do those things without an immense amount of retraining and bundles of effort and determination!  

Whenever things seem be going pear shaped and like nothing will ever give, she throws these little gems my way as if to say, “okay mum I get it, time I did something new” and she does!

The moment that she sits unaided, crawls, walks or even hears properly (or has a somewhat improvement on her hearing) will be an almighty day, more than just a milestone, it will be a game changer. It will be for all the doctors that tell us our children “can’t” “will never”… That actually she CAN. On paper she shouldn’t be able to do things, but meet my little girl and she’ll show you a thing or two about the world. 

She will never, right? … “She SHOULD have died” and on so many occasions …. Did she, no! Maybe luck is on our side, even though I often say we are the most unluckiest family in the world – not just because of this but lots of other things! Maybe we have been blessed with all the luck upon Ava. And everything else is just something else we have to get on with, if so I will not complain, keep it that way. 

Ava was meant to undergo another major operation, this would have been the second one that’s required her to be completely opened up, and I was terrified. After all these procedures and our new “normal”, you’d think I’d be used to it, well I’m not and it will never get easy. Always have “what if” sitting on my shoulder. The burden of signing those consent forms to say I agree for you to do what you need to do, having those risks in black and white, yet still signing on the dotted line. It’s gut wrenching putting her life in the hands of other people, no matter how brilliant they are, no matter how many statistics they poke under my nose. Statistically Ava was a 1:12000 worldwide baby! So, I don’t think much of these statistics because I always think it’ll be us for sure!

Ironically the operations were cancelled and like so many times before hearing that a major, very important procedure was cancelled made the words ricochet around my head. To have your hopes pinned on this one procedure, to build yourself up to accept that the very ‘black and white’ is that she could die, is crippling. 

She is now booked in tomorrow, Monday, and then again on Wednesday for the more major open surgery. Now the let the fear and dread seep through my veins.