“I always go over the top for Kayla at Christmas, because I never really know whether this will be her last.”
When I was pregnant with Kayla, I was told she wouldn’t survive the birth. They’d found fluid on her brain and said that she wouldn’t be able to breathe on her own. But when she was born, she came out screaming – and it’s been a rollercoaster ride ever since.
At six months old Kayla started to have seizures. She still has them to this day (she’s eight now). We never know when they will come – it could be day or night. There are signs I’ve come to recognise now – she goes stiff and her breathing changes.
I wait for five minutes and, if she hasn’t come back to me, that’s when I have to give her the first injection of her ‘rescue’ medicine. Another five minutes and it’s a second, stronger injection – and that’s when I have to call the ambulance because it’s so strong it could be fatal. Luckily, I haven’t had to give her that second injection for a while now.
Life is exhausting for me. For eight years I’ve been shattered, surviving on hardly any sleep. We can’t really go out anywhere in case Kayla has a fit. I must be with her, every minute of every day. It’s meant my life has been on hold, really. And, it’s hugely affected the life of her big brother, Bradley.
Brad’s had to take a back seat since Kayla was born – she needs all the attention. I know sometimes he’s resented Kayla for taking all my time, and then he’s felt ashamed and guilty for thinking that, but it’s just a completely natural reaction to a completely unnatural situation.
But the thing that gets us all through, that keeps our family going, is The Donna Louise. It’s our lifeline, our second home.
I’ve known about The Donna Louise ever since it opened – because I went to school with Donna Louise herself. I remember thinking how amazing it was, all those years ago, that there was a children’s hospice in our community, all because of that girl I knew. Now, my family is just one of the many, many families that this remarkable charity cares for each year.
Kayla started going to the hospice when she was three. We’ve got into a routine now where, three times a year, I’ll ask the hospice to have Kayla with them from Monday to Friday – and those four nights are incredibly precious to us all.
You see, it’s when I get to give all my time and attention to my son. We go out for pizza or to the cinema – when you haven’t been able to do that for years, the cinema is just brilliant. It’s also time for me to just switch off from the constant worry of Kayla’s care (although I’m still constantly checking my phone, half expecting a ‘you need to get here!’ call).
When Kayla is at the hospice, I can sleep. Not a whole night; I’m conditioned now to waking up several times a night. But I can go straight back to sleep – and I feel so different on those mornings. It’s like being a different person.
But the biggest win is for Kayla. She absolutely adores going to The Donna Louise. Kayla loves sensory stimulation (at home we’ve got pretty much every ‘light-up-and-play-atune’ child’s toy you can think of) – but The Donna Louise has so much more than we can offer at home. They have big sessions with her in the multi-sensory room and she smiles and babbles away with the nurses (Kayla talks, but in her own unique language!). Her absolute favourite thing, though, is when Phil the music therapist comes in. They play songs together; Kayla shakes her tambourine and sings along at the top of her voice. You can see she’s having so much fun.
When we first came to the hospice, I was afraid of what I’d find – but the reality is a million miles from what you naturally think when you hear the word ‘hospice’. The Donna Louise is a warm, friendly, welcoming place where Kayla has loads of fun while we grab a few precious days of ‘normal life’.
It’s a home-from-home for us now, the nurses are part of our family. They’re the only people in the world I trust with Kayla’s care. I cannot overstate how vital this charity has become to us; I certainly couldn’t imagine our lives without their incredible support.
Just like every family with kids, we hugely look forward to Christmas. Our house is like an explosion in a tinsel factory, we have a massive tree with lots of lights that makes Kayla so happy. I always go over the top, if I’m honest; because I never really know whether this will be Kayla’s last Christmas.
The hospice nurses know this too. They work so hard to deliver an amazing Christmas experience for all the children who go there. I always try and book one of Kayla’s weeks at The Donna Louise during the Christmas season because I know how much she enjoys the lights, the sounds, the carols – and she gets to see Santa!
I’m very aware that Kayla only has this special time at The Donna Louise – and for me, my time with Bradley – because people like you, who have never met us, choose to give donations to The Donna Louise. I know one of the Children’s Nurses Steph (who is beyond wonderful by the way!) has written asking you to help pay for the care that makes Christmas possible for children like Kayla. I can promise you, that if you can donate to the hospice this year, the looks on the children’s faces as they come through the doors over Christmas are more reward than you could ever want.
From me, Bradley and Kayla, I just want to say ‘Thank You’ – for being part of what has become such an extraordinary and priceless part of our lives. We all send every best wish to you and your family for a happy and peaceful Christmas.