Skye’s 8 year old sister Evie has a rare chromosome deletion and kidney problems which has resulted in her having complex needs. Skye has taken on a lot of the responsibilities to care for her little sister, all while only being 15 herself.
Skye first received sibling support from Little Bridge House children’s hospice, when the family started being supported by Children’s Hospice South West (CHSW). In the early days, she enjoyed activities like baking and painting with the Sibling Support Team. The family’s care was then moved down to Little Harbour children’s hospice, closer to their family home in Plymstock, where they have now been visiting for 2 years.
Skye’s family had never heard of CHSW but were made aware of it through Skye’s primary school. They donated and Skye took part in ‘Mufty Days’ in support of the charity, but they never thought they would end up needing the services of the hospice.
Growing up, a lot of Skye’s childhood was put on hold due to her sister being poorly. She now has the responsibility of helping Mum Amy and Dad Shane with Evie’s day to day care needs.
Amy said: “Skye knows the nitty-gritty things about her sister, she knows how to carry out her care. But me and Shane, we don’t want her to have to do them, and we don’t want to put any pressure on her.
It’s nice when we’re down in the hospice, at Little Bridge House or at Little Harbour, we get to have that 1-on-1 time with Skye, because she does miss out. There have been occasions where I haven’t seen Skye for 5 - 6 weeks because we have been in hospital with Evie and we were a 5 or 6 hour drive away from her, so I couldn’t just come home in the night.
When the family is at the hospice, they get to spend quality time together, and Skye can decide whether she wants to be with her sister or not, a decision her parents totally respect, especially now that Skye is a teenager.
The 2 girls are supported by the hospice in different ways.
“Ultimately, the main support is for Evie”, said Amy.
“But as a family, we get to give that time back to Skye, as this is not what she expected when we told her she was going to be a big sister when she was 7.
From the start, Skye has not experienced a normal sibling relationship with Evie.
“She didn’t get to be at home and have that cuddle or come into a hospital bed. Skye’s introduction to her little sister was through an incubator.”
When Skye is at the hospice, she can have those moments back with her parents as well as having quality sister time with Evie, without having to look after her care needs. They can splash around in the hydrotherapy pool or have fun in the soft play or sensory room, all without a second thought.
Skye also gets to spend time with her mum, and they often escape up to the Crow’s Nest where they can enjoy 360-degree views of the hospice gardens and even look out to the sea. Amy said: “When we want that time together, we go up there. We know we are close to Evie, but you also feel far away. You get to have those moments on your own.
When it comes to the girls, I think I've always been conscious of making sure Skye is never forgotten. She has a very quiet personality, so sometimes fades into the background. We try and make sure Skye never feels lost, like she has in the past. Evie is such a social butterfly and waves goodbye to us when we’re at Little Harbour, but Skye is our quiet soul, so she tends to stay closer.
The family has also made friends with other families that use the hospice. Skye has formed bonds with other siblings and the families are able to share laughter and stories together.
Amy said: “The teenagers just get to be teenagers, and don’t have to worry about their siblings. They can have their mums and dads to themselves for a bit, and it can be about them in those moments. This doesn’t always happen in our everyday lives, so for that we’re immensely grateful.
“It is so nice to have our daughter back, as Skye can be carefree and do what she pleases, and Evie is so relaxed at the hospice now. Also, just the cliché of getting some sleep. When we were at Little Bridge House, we called it our holiday place, or Evie and Skye’s getaway.”
The family take part in various fundraising activities for the hospice. Together they attend CHSW events like Rainbow Run and Santas on the Run, and Dad Shane is also taking part in Ride for Precious Lives and the Plymouth Half marathon this year.
Amy said: “The fundraising is our thank you and our way of giving back. Skye has ADHD, so we must take things into consideration for her. When we do the fundraising and the events, both girls can just let their guards down and just enjoy it.
For Shane and me, it’s amazing to see that Skye can be involved as much or as little as she wants and that’s okay. She can let her guard down, and it is about her in that moment.”
Amy, Shane, Skye and Evie are able to make memories that will last a lifetime at the hospice. Amy finds it hard to ‘put into words’ what Little Harbour does for her and her family.
“The sleep, the food, it is all amazing, and of course the care Evie gets.
“I know how hard it is sometimes to have a daughter like Evie, but from a sibling aspect, I can’t imagine what it is like for Skye. She has been offered help from the Sibling Support Team at Little Harbour, as she received it at Little Bridge House. But she is at that age now where she is becoming her own woman. It is nice for her to dip in and out and not be judged for it. And not have me and Shane asking her to ‘draw up this’ or ‘get this for Evie’ or ‘watch her a second’ as she cannot be left on her own. For Skye, she gets a bit of non-nagging for a few days, it must be heaven!”