I think my blog is a bit negative, I know it is, but, it’s somewhere I can come at a stupid time in the morning and just write how I feel. I can’t change the world, or my situation, it’s simply the cards I’ve been dealt and I just have to get on with it.

I’m slowly removing the layers of all this anger, frustration and upset, slowly breaking down barriers and trying to understand why, sometimes, most days, I have a huge feeling of hopelessness. How most days Ava will be having a meltdown over something so little to me or you, but to her, it’s catastrophic. There’s no rhyme or reason to it. There doesn’t have to be, it’s just Ava.

I’m trying to understand why, when Ava has these meltdowns, does it send me into a meltdown and I just fall to the floor in tears, why do I dread my own daughter?

Again, another thread that has the same words in it “I love my daughter but,…” It’s true though. Although I don’t want to ever harm her and I never would, there are times when I DO want to just give up, there are times when I just think, you know what sod this, I’m off, and I have come so close to this at times. It’s frightening really how you can see just how the mind processes, how that when the right buttons are pressed a person can go into complete self destruct and I think that is where I am right now in my life.

I’m at the point where I have SO many emotions going on at once that I don’t know how to process it all, I just end up sitting here going, nope, I definitely can’t do this and I most definitely do not have the energy for this either. If only things were simple.

I guess today was a bad day, which is why I am here, writing when I really should be sleeping but I can’t.
It’s dawned on me as I’ve just sat down from putting Little Mermaid on for possible the 5th time this evening since putting Ava to bed, that yes, I actually do dread my own daughter and I feel terrible for admitting that. I just tried to administer medicine like I usually do, my nightly routine of medicines to keep I her ticking over and safe. She stirred and was going to be sick so there I was at the ready to suction it all up so she doesn’t choke. I felt my heart bouncing in my chest and I just wanted to cry and punch the walls at the same time. I fell helplessly desperate and angry all mixed into to an awful cocktail. Why do I feel that way?

The only answer I can come up with is that I hate having to do it.

Why does MY daughter have to suffer?

Why does MY daughter have this condition?

Why ME?

Why do I have to do this ALONE? Ultimately I think this is the very bigger picture here. It’s loneliness, in the darkness of the night, it’s nearing 1am and I can hear Sebastian the lobster singing ‘ under the sea ‘, and over the top of that are tired, fed up, Ava is moaning. I sit here with not a thing I can do to help her, and I know I also have to go back and administer more medication after she’s already thrown up the last lot so I have to try and get those back into her. Argh. We can just go in circles for 3-4 hours until one of us has truly had enough but I don’t like to give up because she really does need the medicine.

Someone asked me the other day, “do you mind people telling you that you’re amazing and that you do a good job”… To be honest I don’t mind, no. But it’s a lie, I don’t do a good job. Behind the closed doors and in my house I’m barely holding it together. People comment how ”well” I look… Again, I’m not going to walk roun looking like a sour puss! But yet you ask  me if I’m okay I’ll tell you I’m fine. When yet what I actually want to actually say is do you know what? I’m not okay. I am completely exhausted, when I look in the mirror I don’t see the person I once once, I see a silhouette of someone who has taken a complete arse kicking from life and who needs a break. I am a million miles from the person I once was. I used to be the girl that loved to take pride in myself, dress up and go out with my friends, a big group of us and dance the nights away, go for dinner. Now my declines, my change in personality means that the majority of my friends have gone, I have only a couple close by who, if I let, would come and aid me. I’m also now a person that is fed up of the bullshit and how blinkered some people are with life.  Get up, and do something with it, stop moping, stop saying that it’s tough because of this and that. You should spare a thought for all the people who aren’t able to go out and do the things that they want to, because either they themselves are ill, or they are a carer for someone close to them, because they, like me, dedicate their life to them.

Do you know how ashamed I am to tell people I am unemployed ,….  (Like I HAVE to justify myself any way!) but it was out of my control, my job was hard, it was SO fast paced but it was rewarding. I had something to work towards. Now, £60 a week is my worth. That is exactly how much I get to be a full time carer to Ava, should I be paid to do a mothers job?? okay it’s a bit different from an average household, but then again I can’t work because I can’t put Ava into nursery, I can’t be picky or choosy, because she doesn’t belong in a normal nursery, there’s no place for her because she is medically complex.

What will happen when she reaches school age? I will see all my other friends picking schools, sad to see their ‘baby’ go to big school and I won’t get that option. I will be told, this is where she is going, it won’t be a mainstream school and she won’t receive the same education as all the other children, she will no doubt still be learning how to walk.

The day is getting closer and closer to when she’s meant to be going to a school of some kind, I know she’s not even two yet, but the accepting of a child I never got is always going to be hard.

Accepting that I won’t go out with my daughter and buy all her new clothes and stationary for her first day at school, that I won’t get to hear all about her first day, I won’t able to listen to her worries or fears or be able to try and reassure her. We won’t get that. It’s not even normal healthy children that I envy, I follow people from across the world who have children with the same condition and I am so filled with joy when these children hit milestone whom are nearly always delayed in some way, but I feel emotional choked up because I know that THAT mum gets it. That mum is feeling how I have been feeling at some point, yet you still can’t help but feel so sad, and so defeated, that the child is younger than Ava and she’s stopped developing and they can do all these wonderful things. She can not.

I need to accept it, I can’t change it, it may be wrong of me but I wish I could change it.

I think back to when my waters broke there are 3 pictures prior to Ava being born that exist, its just after my waters broke at home right up to when when she was delivered they are full of happiness and excitement, I can’t look at them. All I want to do when I see them is reach into the photograph and tear my smile off my face and warn myself that something is Wong. Because believe me, the photos that followed after she was born scream hopelessness and devastation…..

Back to being a nurse I go, dragging my aching exhausted body out of this bed to do it before crawling back again to get some sort of sleep.