14/09/2016 12:22 BST | Updated 15/09/2017 06:12 BST

I'll Be Your Voice

I'll be your voice

When you cry and we have tried everything to soothe you, I want to cry with you. Are you in pain? Scared? Or has something happened? I don't know because you can't tell me.

The days you wake up in a bad mood, was it a nightmare you had and can't tell me about?

The days you just want to sit and cuddle me for no reason what so ever, squeezing my hand tightly. Those are the days I know we are doing ok.

When you are having a bad day and lash out or cry angry tears, and I don't know the reason why.

When you are in hospital having tests not knowing what is coming next. I explain to you but do you fully understand? Are you scared?

When a mask is put over your face and you are wheeled away for a operation. Your little eyes flickering as you fight to stay awake. Do you ever think why mummy?

When you just want to sleep the day away and be alone, is it something we did? Or are you having a down day?

When you watch in silence your siblings playing together, do you think why can't I?

When you see mummy arguing with consultants about the best care for you, do you wish you could tell us both your views?

When a tree gets dragged out of the loft once a year and the house is flickering with lights. Do you wonder what is going on?

When we sing to you one day a year and present you with a giant birthday cake and lots of presents, is that confusion I see on your face?

When we nearly lost you and you woke up smiling and didn't stop for a full month, was it something you saw? Do you know something I don't?

Imagine not being able to tell someone how you are feeling, locked in a silent world with only your thoughts. To not be able to say your head hurts, turn the tv down, I'm hungry or I am cold.

Mummy tries her best for you, I see you closing your eyes and I get you a pillow. I see you looking uncomfortable I change your nappy. I see you trying to eat a magazine I get you a snack. I see you looking deep in thought and I smother you with hugs. I hear you trying to talk and I talk for you.

Sometimes I wish I could climb inside your head, to see what you think. To make sure I am doing ok for you, and if I am making the right choices for you.

Half of it is a guessing game, are you ill? Brewing a seizure? Toothache? Tv too loud? To hot to cold?

I sometimes hold you back from things, I don't trust many people with your care. What if you didn't like it? Or something was said to you how would I know? Do you resent me for that?

When new medication is introduced and you refuse to take it, am I doing the right thing making you have it? I sometimes ask myself if the side effects are worth it and if that's why you refuse certain medication.

When I have made you pasta and you fancied chicken, I just have to guess what you want for dinner, sometimes you refuse to choose for yourself.

I see you with your all knowing smile, sitting in your little chair watching. Taking it all in, and figuring out ways to annoy your brother and sisters. Your little laugh when you stand in front of the tv they are watching. Or sitting on their laps as they are in your chair. Taking them an empty juice cup to fill up. The little ways you find another way to talk amazes me. On the days you just want to be alone, covers pulled up over your head. I understand I get it, I'll be your voice.