Stories

Awkward moments

My name is Ami, I am 13 and I have a brother and a sister. My sister, Faye (pictured right), is 16 and is wheelchair bound. Faye doesn’t have a diagnosis. She has scoliosis of the spine and has to wear a spinal brace all day long. My mum’s life revolves around supporting Faye – on a daily basis this involves washing and dressing her, administering all her medication and frequent trips to the hospital. She is tube-fed which is given by gastrostomy in her stomach. Most days Faye will go to school unless she is unwell.

I am at secondary school now. I don’t always tell everybody that I have a sister who’s disabled. It’s a way of protecting myself and Faye from other kids being mean or saying something that might hurt and upset me.

When friends come back to my house, some of them are a bit awkward around Faye. I think they sometimes feel a little bit uneasy and don’t understand how to approach her.
When I was younger my friends were more open and didn’t treat Faye differently; back then it was really nice, comforting in fact.

Outwardly I think I’m like any other teenager – I love dancing, listening to music, talking to my friends – inwardly, it’s a different story. I’ve grown up in a world full of hospital visits, surrounded by medical terminology. I know so much about Faye’s condition and could probably educate other children and open their eyes. I’ve had to deal with things that most other girls of my age will never come across. Faye’s condition has meant that we have to do things differently as a family. That’s where Noah’s Ark’s Sibling Programme has been a big help, especially to me. I’ve made some lovely friends at the group. It’s really important for me to have friends who have brothers or sisters who are in the same situation – it means, for nearly the first time, that I don’t feel like the odd one out. It’s very hard when I can’t speak about Faye or involve my sister in conversations. It’s good for me to have a place to go where I’m no different from the other kids.

I enjoy all the activities and outings that I’ve been to as part of the Sibling Programme. In particular, I really loved going to some dance and drama workshops. I made so many new friends and am even more interested in drama now… if that's possible! It was a dream come true.

The Noah’s Ark Sibling group has given me the chance to enjoy new activities and outings but, more importantly, I have made new friends and gained lots of confidence – it really is like having another family.

Ami (left) with Faye and their mum

 

       With thanks to Ami and family and Noah's Ark Children's Hospice for allowing us to reproduce this article here.

 

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