What respite means to me

Tina Carr

When you hear the words respite or hospice it can be quite scary. Statements like ‘life threatening illness’, ‘not expected to reach adulthood’ and ‘end of life care’; all of these things make it completely understandable as to why some people may not want to engage with the service. But when you see past those words you see hope, you see support, you see kindness and you see friendship.

Coming home from hospital after almost 11 months in intensive care with a diagnosis list consisting of – but not limited to – trisomy 21, tracheoesophageal fistula with oesophageal atresia, tracheostomy dependent, 24 hour ventilated, tube fed, hearing impairment, sight impairment, hypertonia and global development delay, not to mention having a small intensive care unit attached to you at all times, life at home after the hospital was pretty scary. In fact for a while I kind of wished I could go back to the safety of the hospital, as much as I desperately wanted to be back home as a family, life was challenging.

Suddenly being alone with a child who required 24 hour care, plus running a home, having 3 other children, endless appointments plus trying to deal with the mental health effects of everything we had been through; PTSD, huge anxiety, lack of sleep…things were not easy. We needed extra support but Darla’s care was immense and it was overwhelming to even contemplate training friends and family up.

A month after coming home from hospital, one of our many appointments was with a family support worker from our local children’s hospice. I had no idea what to expect, no idea what she was going to say, no idea if they would even be able to help and what help we even needed. But this appointment was different to the many medical reviews we were quickly getting used to. This appointment felt like someone was really listening to our story, someone truly cared about what we had experienced – she seemed to understand the fear and drama that was our life. More importantly than that, she was truly interested in watching Darla play, in asking what were her favourite toys, what things made her happy and sad. This wasn’t just about her as a medical diagnosis list, this was about her as a little human, as a child who should be playing and developing, having fun and learning…all the things that when living in intensive care can be near impossible to achieve.

We arranged to go and have a look around the hospice, not really too sure what to expect or if we were even going to go ahead with the offer of care, but we decided there was no harm in taking a look.

This decision was probably one of the biggest game changers in both our and Darla’s lives. The hospice was huge, bright and airy, colourful and inviting. There was a sensory room, soft play room, arts and crafts room, dining room, huge playroom and the most amazing garden. Everyone was friendly and said hello, everyone said hello to Darla – believe me this is not always the case in day to day life. Darla lay on the floor surrounded by amazing sensory toys, at one point she lay in a ball pit! A 12 month old in ball pit, completely normal right ?? Wrong! A life spent in a hospital bed, recently upgraded to mainly hanging out in her bedroom, a life consumed by the importance of having all her medical equipment put first and now she was just chilling in a ball pit. She needed this, I needed this, we as a family needed this.

We were introduced to a nurse who was new to the hospice, who had previously worked at the same hospital we had been at for such a long time. The rest as they say, is history. She was full of positivity, energy, happiness and hope for our future. The thought of ever actually leaving Darla there was beyond traumatising, I was nowhere near ready to leave her, nowhere near wanting to leave her, nowhere near understanding how to go about feeling confident to leave her. But what I did know wholeheartedly was that she deserved to be there, she deserved fun and laughter, games, friends, a life of her own and some normality, whatever that is!

Slowly, very, very slowly we worked up to popping to the kitchen for a cuppa, wandering round the garden, eventually after some time braving a trip to the shop and even venturing out for lunch! It was nothing short of a miracle. She was safe and happy, I missed her terribly and would almost need to be dragged out , purely because I just loved watching her play and being so immensely happy. But I also began to realise the importance of catching a break, of being able to do things I wanted or needed to do, even if half the time it was catching up on admin, oh the joys!

But no matter what we were doing, I was confident Darla was in the best possible care. We were finally able to do things with the other children without dragging intensive care world with us, we could just be there for them, something they had missed out on for almost a year. I am so thankful for this. Life at times now had essence of “normal”, the healing process for us as a family could begin.

Over time I truly looked forward to our Thursday respite session and Darla’s overnight stays at the hospice. Having a nurse you trust and believe in to provide respite care for your child is an immeasurable feeling of gratitude and something that if you are in the position to be offered I would really encourage you to investigate further. Yes, the thought of going to a hospice can be scary, but the care and support that is on offer for the whole family can be a life saver.

As many parents of children with DS will be aware, sometimes life can throw all sorts of curve balls your way , there may be a need for an increased level of support through services such as physio, SALT, OT etc. and some children may have medical needs either related to or completely separate to having DS. But if like us, you are surrounded by a team of people who are there to support and help your child developmentally, respite or hospice care can make a huge impact in these areas, having a safe place to play with nurses trained in your child’s care needs, can be so beneficial for children who need it.

Darla started receiving respite care at the hospice almost 4 years ago. As she is about to start full time school sadly it is time for us to say goodbye to our regular weekly respite sessions. We will truly miss everyone at the hospice, especially Darla’s nurse who has become more like family to us. I am so thankful for all the care and support they have given us and so glad we braved that first visit 4 years ago, we certainly would never change our decision to accept the amazing care we have been so lucky to receive. Please if you can support your local children’s hospice, especially during these unprecedented times, do consider donating where you can.