We moved to this house when I was about 8 I think, this wasn't my room straight away, my big sister had to move out before I got it.
But this room holds so many memories, so much joy and pain and fear and anxiety and some love.
It's been painted and changed at least 4 times since I left it and yet I know behind the paint on the wall that now stands on front of me, mine, my sister and my brother's names remain. I don't fully remember us doing it, stood together paint brushes in hand and painting our names there for what we assumed would be eternity. It didn't cross our minds, then, that we wouldn't have all our lives to be reunited in this house, in this room.
But this room holds so many memories, so much joy and pain and fear and anxiety and some love.
It's been painted and changed at least 4 times since I left it and yet I know behind the paint on the wall that now stands on front of me, mine, my sister and my brother's names remain. I don't fully remember us doing it, stood together paint brushes in hand and painting our names there for what we assumed would be eternity. It didn't cross our minds, then, that we wouldn't have all our lives to be reunited in this house, in this room.
His room is still filled with parts of his life, as short as it was. Certificates, his art work, his stuff, even his old TV.
In this room, my room there is little left of me. It's the guest room now. I have a draw where I keep my things. However the view from my windows is subtly different but less changes than the items in the room. The most striking change is the appearance of the extension built for my dad. To accommodate his growing needs. IT sits heavily below the window and blocks part of the view.
He hasn't seen this room for about a decade, unable to navigate the steep stairs.
I'm here because of VHL. I'd still be with my little family, getting my baby girl ready for bed and enjoying an hour or two of us time with my ever reliable and ever rational husband.
I'd probably not be thinking of all this and the devastation the disease has imposed on father's body and his relationship with my mum. I'd probably be able to forget his daily physical struggle to do the simplest of things and the anger in my mum's eyes as she tries to be patient and not snap.
I'd definitely not be thinking of the steady stream of daily carers who come to do some of the difficult jobs. Their clocking in and out, the ease and routine they have in my childhood home. The intimacy they develop with my father and the distance my mum puts in-between her and them.
The carefully constructed barriers she places so that it can still feel like her home.
I'd be free of all that and if it weren't for VHL so would they.
He hasn't seen this room for about a decade, unable to navigate the steep stairs.
I'm here because of VHL. I'd still be with my little family, getting my baby girl ready for bed and enjoying an hour or two of us time with my ever reliable and ever rational husband.
I'd probably not be thinking of all this and the devastation the disease has imposed on father's body and his relationship with my mum. I'd probably be able to forget his daily physical struggle to do the simplest of things and the anger in my mum's eyes as she tries to be patient and not snap.
I'd definitely not be thinking of the steady stream of daily carers who come to do some of the difficult jobs. Their clocking in and out, the ease and routine they have in my childhood home. The intimacy they develop with my father and the distance my mum puts in-between her and them.
The carefully constructed barriers she places so that it can still feel like her home.
I'd be free of all that and if it weren't for VHL so would they.
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