We all know a house isn't your home, it is the people within it. You can be anywhere in the world and as long as you have your favorite people around you, it's home.
Well for me, a house is only a home when Terri is in it.
I can be having the worst day, feel poorly or just bleh, but as soon as i'm home that all changes. If Terri is there, I know about it, she is my shadow. Anywhere I am, she is. If i'm not there she wants to know where I am, why and when i'll be back. She gets scooped up for a cuddles or follows me upstairs. She is a typical little sister, I think of her more as an extra limb than a separate person.
But recently, it's different, she's been so poorly - only a couple of weeks ago she was in hospital after having three TIA's and was basically unresponsive. Coming home to a house without her was torture. I thought we were going to lose her. I was lost. She isn't Terri anymore, or at least not at the moment.
Where she would usually be loud and bossy, telling us we're all a pain in the arse, now she doesn't speak. We get whispers. The odd "hiya" or "help" and that's all.
Where she would usually rule the roost, feed the dogs and keep us in check, now she doesn't know where she is. She can't move around the house on her own or see where she is going.
Where she would usually snuggle up and get comfy, giving love and kisses, now she can't settle, she won't sleep in her bed and she's shaking constantly.
Now, when I look at her I feel like i'm grieving, for what she used to have and has lost, for what we have lost. I see Facebook memories of old videos and pictures and rather than being happy, i'm heart broken.
I don't know how to feel. I am used to Terri bouncing back as fast as she falls down and it seems like we have come to a point where that doesn't happen anymore. I love her, more than anything, but loving her so much is making watching her struggle painful. I actually feel sick - physically. But other than guiding her, loving her and keeping her warm, there isn't much more we can do. We are at the hands of Cockayne Syndrome, and its shit.
Probably the most depressing thing I have wrote in my life - but it's out there now and I can breathe. Don't worry though - we're ok, as long as we have her here.
xxx
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