Hospital Transport for Terminally Ill Children

We first heard about Rainbow Trust through our community nursing team at our local hospital. Cleo was just three months old and we were preparing for her second open heart surgery when we were introduced to Nicki Phelan, our Family Support Worker. She started visiting us just before Cleo’s second operation so Nicki spent time getting to know Cleo. 

Nicki spent time with us, helping me out at home and getting to know all the family. She’s never looked after Cleo while I’ve slept or anything, we’ve always enjoyed activities together. She and Bo get on really well, Bo really likes her. It’s good that Nicki can spend that time with her. She sometimes collects Bo from school as well if Cleo is having a bad day. 

Nicki helps us with hospital visits. The stress of going to those meetings, knowing what your child will be put through and how stressed she will be is so difficult. The journey to the hospital is always so worrying - it’s great to be able to share that with someone. Rupert is self-employed so any time he takes off work means lost income for us. And, someone needs to be at home for Bo. Having Nicki support us means that he can continue working, and I don’t have to go to appointments by myself, and Bo is still looked after.

 I don’t think people understand the logistical problems of taking a child to a hospital appointment. You’re thinking about routes and traffic jams and parking tickets and at the same time, you’re thinking of what you’re going to ask the doctor when you’re there and how you’re going to get your toddler to sit still during an assessment or treatment. Nicki comes to all appointments with me. She’s there when Cleo needs blood taking, she sits with her and calms her down and also listens when doctors are talking about Cleo’s condition. Because I’m so close to it, it’s good to have a third party there, you can perhaps be a little more objective when she’s listening. 

I was made redundant when I was on maternity leave so finance is a major issue for us. I can’t really go back to work when I’ve got a child with complex health needs in the same way I worked before. The reality is you do need more money when your child is sick. For example our heating bills are massive because we’ve got to make sure Cleo is warm enough. She has bad circulation so we don’t want her using energy and losing weight trying to keep warm. 

Besides practical support at appointments and with Bo, Nicki’s also there with me when things just get on top of me. She’ll sit with me and just be there when I’m crying. She’s there to just give me a hug when I need one. The weeks before Cleo’s last operation were really tough – Nicki and I would just sit in the kitchen together and talk things through. As much as she could, she emotionally prepared me for whatever might happen. Each time your child has an operation you worry that she might die. You need someone to talk to, who knows that, so you don’t need to keep saying it.

Before each operation, it’s harder. Now that she’s older and has such a great personality, the thought of losing her is so much harder. This little person who brightens my day, I love her company – we are so inextricably intertwined. I am her protector and her crutch and I love her to bits. 

Rainbow Trust makes life easier by us knowing that there’s someone there who can help you practically and emotionally when times get tough. Knowing that someone else is there who you can turn to. 

Nicki and I get on so well, we’ve really clicked. We’ve known Nicki three years now, and the whole family love her. It’s good for me to know when Nicki picks Bo up from school, that Bo is looking forward to seeing her and doesn’t feel like she’s being left with someone she doesn’t like. She’s been a constant during most of Cleo’s life. We’ve built a really good relationship with her. Few people have been there with us every step of the way but Nicki has seen that 360 degree view of our life and she understands and I know that our conversations are confidential and that means so much to me. 

Before Cleo’s third operation, we thought we were going to lose her so I wanted her christened and since then I have been attending church. I have found comfort and support in the community. It’s given me some peace and fulfilled a spiritual need within me. 

Nicki makes me laugh when I need to and supports me when I need to cry. When you’re living with a very sick child you need someone like that in your life. 

For Jo, accepting her lot in life is her way of coping. She knows that none of us have any control over our lives. When asked what she missed, she said, “There’s nothing I miss, I’d rather have Rex [her still born child] back for one day. Focusing on Cleo and making sure she has the best possible life is a massive job in itself. It’s changed me, it’s focusing on a simple life and what that means to us.” 

You’ve got to have hope. I am continually hoping that things are positive for Cleo.