We celebrate Kye’s birthdays with street parties because they’re so important to celebrate her life. They’re a huge part of Kye’s world. Now that she’s 14, she’s a little woman.
At eight months old, Kye got a simple cold. I wasn’t worried – my sister was looking after her so I packed her bag as normal, put some Calpol in there, and went off to work.
When I came home from work Kye didn’t seem to want her milk. I didn’t think anything of it but when I picked her up she seemed a bit floppy. At A&E the doctors were able to tell me that Kye was actually in a coma. She had completely shut down. The following hours were like a living nightmare as various tests were made.
The doctor’s established that Kye had ‘acquired’ brain damage. The only virus they had found in her spinal fluid was Influenza and we were told she wouldn’t survive. We couldn’t believe that a simple cold had caused such devastation.
Three years after Kye’s first episode, she suffered another one. It was at this point in 2009 that we were introduced to Noah’s Ark. To me Noah’s Ark is a place to meet other families who are going through similar things to us.
As Kye has such a destructive immune system I had to withdraw her from school. Her world is now much smaller and protected. Kye spends so much time with me, she’s like my second skin. I can tell when she’s bored, when she’s relieved, when she’s cross. I feel guilty that she doesn’t have interaction with her school friends.
This is why it is great to know that Vikki, Kye’s Specialist Play Worker, is able to visit every week. Vikki comes especially to play with Kye. Having her around is a breath of fresh air for Kye, and for me! With her support, Kye now has a full, varied week ranging from home school, family fun and a special play day.
Kye’s play sessions with Vikki are so different to her play with me or her siblings. I can tell she enjoys seeing Vikki. The two of them are forever making stuff together – lots of sensory things with foam, bubbles and feathers.
Kye’s condition has completely damaged all her cognitive skills except her hearing. She’s got to know Vikki’s voice and it’s so nice to hear the interaction between the two of them. I can hear the tones in Kye’s voice change; you get cheeky Kye, happy Kye, ‘asking for more’ Kye. I often listen and smile to myself when I hear the interaction. It’s beautiful and a real pleasure to hear.
I feel able to talk to Vikki and ask questions about their sessions together. I know I can ask her “Can we change this?” or “Can we try something new?”
Play is a part of Kye’s world that she really enjoys. It brings out a totally different side of her, a different attitude. Through play she is able to communicate. It is obvious that Kye is comfortable with Vikki and enjoys her presence.
I never thought we’d see these traits. It’s hard to say but I’ve concluded that the ‘complete brain damage’ doesn’t make her any less Kye. I always say to people, ‘don’t be fooled by her brain damage’ – she knows what’s going on.
Noah’s Ark has taught me and the kids a lot, they’ve taken an enormous load off us. Over the years, they’ve encouraged me to step out of my shell. I’ve gone to places and done things I never imagined I would as a single mum with a disabled child. I’ve met phenomenal parents and all of our children are just fabulous.
I’m forever indebted to Noah’s Ark for all of the support they have given, and continue to give me and my family. Noah’s Ark is a huge part of my world, and I know they will always be there for me and my family to help in any way they can. The support they give is priceless. Without it, I know things would be different for me and my children.
HELP US BRING THE ARK TO LIFE
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