I never thought at almost 7 I would be changing my daughters nappy multiple times a day. I never thought at almost 18kg I would still be carrying her in my arms up and down the stairs, too and from the car or in and out of the bath.

I never thought at almost 7 I still haven’t accepted I’ll never hear her speak or reply to me “I love you Ava..”

There are a lot of things I never thought I would be doing for 7 years straight with the likelihood of many more to come. But I do it, we move, and a mother’s love knows no bounds. Ava is hard to look after, I also never realised how hard her behaviour would become so now it’s a massive double whammy of medical complexities and then severe behavioural problems.

Life with Ava is more than the fast Lane; there is no word to describe how each day begins and ends with her – in fact there is no end. Even now at almost 11pm I’ve changed her bed 3 times, 3 times I’ve had to wash her bed down, and her, because she has taken her nappy off and unscrewed her milk so that’s run straight into the carpet. I know, I can hear you now, “put it on backwards” “a baby grow” “tape”.. believe me when I say we have tried EVERYTHING. She is a literal Houdini and is too clever for her own good. I want to put her in a wet suit that goes up to your neck – that would work I think, but you have her tubes and bag, the suit would occlude the line and she wouldn’t get her feed or her bag wouldn’t drain. So what do I do? I plough on relentlessly, knowing full well that now I’m in bed, I’ve done all her cares (cares I can do whilst I’m physically awake and with her) I will be greeted with another flooded bed, a soaked Ava and more washing.. oh and highly likely a child that’s missed out on hundreds of calories because she would have unscrewed her feed.

I’ve grown more and more resentful over the last few months, I’ve purposefully pushed people away because watching “typical” families and “typical” children feels like a stab to the chest. These phases children grow in and out of pass; sure, I know this I have 4 other “typical” children. I know the score, but with Ava it’s a phase that stays, it never goes, we just seem to add more phases the older she’s getting. This is making for a really difficult life, my patience, my sanity and my strength is being stretched beyond its limits every, single, day.

Ava’s physical health is up and down more times (41st operation) than I care to count. More surgery is on the cards and I watch her suffer with something new each week and the ever growing number of hospital trips grows weekly – much like the bacteria that seems to harbour in her at the moment! Her annual reviews seem to creep up so quickly because there’s always an annual review when you’re under so many specialists, and so do her reviews at school etc.

I take the weight of the world on my shoulders, every parent does. I left this draft and went to pick it up this morning just to see what Ava got up to in bed and what I was greeted with. And sure enough after her Dad went on a fourth time last night this morning she was paddling in her own urine and faeces. She then throw a massive fit at me because I wouldn’t carry her down the stairs because she was soaked and dirty and she can shuffle with her hand being held and threw herself to the bottom of the stairs. She has slit her knee open and is now holding her breath to make herself go blue and pass out. She won’t let me near her to clear her airway and all I can do is wait till the baths run and then give her all the medication in the bath, try end secure her during the day and battle night again later.

I’ve got to disinfect her bedroom and contemplate having carers again for Ava or the possibility of her being sedated over night so she actually does sleep. No amount of distractions, toys, TVs or iPads would hold her attention for any length of time. It falls on us to entertain, keep safe, clean and keep her alive.

It is more than exhausting and is complex needs mums are not okay even if we say we are, we are not.