Stephanie - One year on without you. I'm sorry.

I've tried to write this several times Stephanie and I'm finding it so hard. I can't believe a year has passed since you have died. 

Every postcard, letter, birthday or Christmas card written, every gift sent, every hello and every goodbye was the same. You didn't respond to us when you were alive. Every word spoken to you then went unanswered just as this message to you now.

Did you know who I was? Did you know how much I loved you? Cared for you missed you? Fought for you?

Were you even aware that all these things were possible?

I doubt you knew what day of the week it was, did you even have the concept of days of the week?

You knew when you were hungry, thirsty, when your pad needed changing, but you were unable to communicate that, ask for food or drink. You'd laugh or cry, pull your hair or ours, take yourself to your room or bang on the kitchen counter. It was all guess work with you Stephanie, a process of elimination, starting each time with your pad, a drink, then food, check your feet, make sure your clothing wasn't too tight, then what? Were you ill? tired? In the end you died because you couldn't tell anyone in time that you were unwell. Who knows if you'd been able to communicate that you were unwell, I might not be writing this letter to you.

Everything was a guessing game with you. Were you happy? Did you like the food you were given? Did you prefer cold drinks? Did you want more cakes and chocolates or were you a savoury girl like your dad?

You ate what we gave you, you drank what you were given. You stole food from your brother's plates, they would fight for their Yorkshire puddings, you'd win. 

Did we read into your responses that you preferred one thing to another? Did we choose not to give you a certain food, drink or experience because we saw a negative reaction one day and assumed it was because you didn't like it.

I'm sorry for taking the raw onion off you when you grabbed it in the kitchen, when you pulled a face but carried on eating it, you might have been enjoying it, but the social norms said not to let you eat it. I'm sorry I let you eat the garden snail that one time. I tried to remove it from your mouth. I was gagging as you crunched through the shell, you bit my fingers and clamped your mouth shut. In the end I walked away from the sound of the chewing but not too far that I couldn't see you until you had finished, then gave you a drink.

In that case I'm sorry for all those times and all those times I missed the signs that you were uncomfortable or were unwell or just pissed off with me or just wanted to be on your own in your room, but we dragged you out. I'm sorry I shut the car door on your fingers. I've never forgiven myself for that.

After you died I discovered the staff in your supported living had kept every card and letter I'd even written. They were chewed and battered, they had read them to you, they had given them to you to hold. Then after you tried to eat it like you did with everything placed into your hand or you swiped, you dropped them to the floor. 

I'm not sorry I fought for you, loved you and I'm not sorry if I got it wrong. I'm not sorry for the meltdowns I had in various supermarkets and coffee shops about the state of the disabled toilets. I'm not sorry for telling people to 'fuck off, life is hard enough as it is' without their thoughtless comments or stares and physical pushing into you as I struggled with a trolley, your bag, a door and a step.

I'm sorry that it's all over. That you don't get to be spit on me one last time, or get to pull my hair or leave me feeling absolutely shattered at the end of the day having taken you out for a coffee or a food shop. That I don't get to lift you in and out the car, while you dig your finger nails into my arm, or drag you round the supermarket anymore or pick you up off the floor because you're tired or change your pad and stop you from grabbing me or the pad and the dirty surfaces in an enclosed space. That I don't get to fight with the staff about remembering to put your socks on inside out so the seam doesn't rub your feet and cause blisters or sigh and raise my eyebrows and go through the whole why you had to wear certain boots to support your ankles and not these flimsy ones, they kept buying you because they were fashionable.

I'm also sorry not no one else shares our loss, that no one else misses you, no one else talks about you. 

Looking after you was hard. We were fortunate that we had lots of external support due to your complex needs. It wasn't a choice not to have you living at home. It wasn't a choice to love you.

Your death resolves us of worry, for your future, what happens to you after we've gone, who fights for you after we're no longer here. That was as much a part of our lives as you were. It came in equal measures. You are no longer with us, our hearts ache for you, our loss, our future without you.

I'm sorry there won't be anymore photos.