So many people time and time again question how I do it?

Do what? Be a parent, a mum? I just do, just like every other mum I know.

The days you don’t hear from me, the days I lay low are the days I admit to myself that it’s overwhelming, that I need time out. But that seems to be happening all the time recently, people ask me “how are you doing?” And I say I’m fine, because what can I say?

“Actually, now you’ve asked; I’ve cried over ten times today, contemplated walking out and never returning about the same amount of times and, often, thought how easy it would be if I were to jump off a bridge”

To the normal “healthy” mind, it seems bizarre someone like me; a mum, to four beautiful children could think that. But I do. It doesn’t mean I would act on it though so they mustn’t be confused.

What is it like to live in my shoes?

More then anything it’s a lonely world. Day to day, never knowing what my little girl will throw my way. Is she sick today, what appointments has she got, medicines, feed, tubes, oxygen…. the battles. My god, the fight she puts up now she’s bigger in having a nebuliser, or to be suctioned. Most days I have to wrap her arms over one another and I almost have to sit on her to get the Catheter in her mouth and nose. If I didn’t do it she would drown…She would choke….It would sit on her chest and cause infections.

I get tired of watching her face scream pain – and when I do the things I do, when I pin her down with nurses, three of us it takes to access her port, three. Two of us have to restrain her while the other accesses the port. The needle goes in and the medicine administered, just to keep the line patent ready for the next emergency admission, the next 3am hospital visit where they’ll be taking blood and pumping antibiotics in to her.

We sometimes go into this loop of repetitive illnesses. The lack of sleep, combined with the worry and fear on whether “this is it” … eats away at you. It steals your happiness, it rips through your soul until you are numb. Until feeling nothing is all you can feel because it’s safer, because if you think, it’s dangerous.

The times I’ve sat and cried; I’ve sobbed because I am so god dam tired and Ava is having endless coughing fits through the night. I’ve had to be at her side changing settings on her oxygen and unblocking tubes, removing plugs from her throat. Then she wakes her brothers, Jasper will then need a feed.

It’s. So. Fucking. Draining.

And, shoot me down for saying this, but sometimes I’ve sat and sobbed, I have gone through the motions of why me? Why her? Why was she born this way? What did I do wrong? And I even sit and think to myself this is ridiculous and I resent her I actually hate my daughter.

For a brief moment of madness, of exhaustion and human nature I scream to myself why was she born? Why do we have to do this constantly! Why do I have to devote my whole life to being a carer not a mother to my daughter? …

With that thought comes the flood of guilt. It seeps into me veins. Why do I think that, am I a bad mum?

No. I’m not.

I just wish, dear god I wish that I could just be a mum and not a carer to that little girl.

I hide from the World these days, I find it’s easier, my purpose is now to keep Ava healthy, look after her like a nurse/doctor would, but be seriously underpaid for it. Also be forced into the position of phlebotomist, pharmacist, nurse, doctor, consultant … etc for a seriously, ridiculously low wage of £62 a week.

I have triggers, ptsd is the centre of my life. I hear a noise on the tv and it sounds like an emergency alarm that was constantly being pulled on Ava and doctors and teams of 10+ people would jump on her and start bagging her lifeless body to get her to breathe again. It’s harrowing. It’s a scene that never leaves your mind. You relive it each day; you tell yourself it’s okay, you’re okay but it’s still there. Mocking you, poking fun at you and making you clam up, snap, and hide. Smells, sounds Ava makes does this to me. It conjures up feelings that make me want to smash my house down to a pile of rubble and the cycle begins again.

Why was she born? Why me? Why her? What did I do wrong?

Some days I log onto Facebook and log off again. I look at things people have posted and I just want to cry. Look at the happy family, look at all the things I wasn’t invited to. Look at that child doing what Ava should be doing. But she’s not.

Is it any wonder I am so tired, the mental torture, the procedures I do daily. You see, I can’t just bathe my child and put her to bed… bath time is an ordeal on its own. Dressing changes, pain, blue episodes,… then once in bed she’s hooked up to some machines, then I can’t even go to bed myself , no. I have to wait until it’s time to administer more medication and make sure she’s on the right settings of oxygen, all machines are on charge and she’s okay for the night, unless of course, a machine shouts at me in the darkest hours. Which they do at least once every night, and then I wonder, why do I bother to go to bed at all? By the time I’ve cleaned the house, sterilised bottles etc it’s midnight?! There aren’t enough hours in the day. I don’t have enough hands, some days, well most days I don’t have enough energy and I want to just switch off. I don’t want to do this any more. Is there some place I can go? Does this wheel ever stop turning, if it does, can I get off please?

But I can’t.

My children need me.

Ava needs me.

Because who else, even though i’ve wished away my own daughters existence; has wiped away every tear that she’s shed? Who else has been by her side come hell or high waters, even when I was fresh out of major surgery I was by her side. Who else knows the equation to calculate the right doses of medication, the quirks that she has, the language she speaks with only her eyes.

That’s me.

Some days I can be slaying parenting and think what’s all the fuss about, but I’ll be honest, most days I’m wondering how the hell i’m going to survive another day. Ask for help? Oh no never, because that’s admitting you struggle.

Then other days I’m awful to be around. I snap and shout at everything the smallest thing sends me into a fit of rage.

I know I’m not alone. I know there are people that must feel the same.

Life is tough. For people for various different reasons so I won’t sit plead my case that I’ve got it hard. My struggles don’t warrant a reason to berate someone else’s feeling towards something that is making them unhappy.

It is what it is, right?