Just A Little Story… stories from Palliative Care Volunteers in NSW

  • by Maria Lopez
  • May 23, 2017

During National Palliative Care Week 2017 we are sharing stories from palliative care volunteers in NSW, collated by editor and palliative care biographer Ros Bradley over the last couple of months.

Ros asked volunteers if they would share an inspirational moment, a story of resilience, a transforming experience, a special poem, text, image or piece of music.

Along the way she spoke to some 60 of the 1,600 or so palliative care volunteers around the state, with 21 of them sending her contributions that gave us unique insights into their experiences, inspirations and inner life as volunteers.

Here is one of the stories. Thank you to all the volunteers who contributed.

Just A Little Story……(by Debi)

I suddenly found myself without the part-time job I had been doing for three years and thought it was time to put words into action. I had been saying I would do volunteer work with children when I felt I had the time. Now was the time so I went to the Children’s Hospital Westmead website to see what I could figure out. It appeared that they had enough ward grannies but I came across the Pediatric Palliative Care Team section. It intrigued me, it seemed a little more of what I wanted – to really make a difference. I had worked extensively in the Early Childhood sector teaching very young children, older students, being a manager, supporting services and families and owned my own child care and education service for quite a while. I emailed the team, then had a discussion on the phone, then went in for an interview.  I was a bit blown away by what this team did to support children with a life threatening illness and their families. I was not daunted by the shorter life expectancy of these children. I just wanted to be part of their lives really. I had had so much myself and raised two wonderful children, so now it was time to help those who may just need an extra hand, or a listening ear, or a gentle hug.

I completed the training required and was excited to be assigned a family, but it took a while. It’s a “catch-22” situation isn’t it? I wanted a family to help, but in order for that to occur, a family would need my sort of help.  Meanwhile, I was asked if I had the time, I could come to the hospital to visit a 2 year-old girl who ‘lives’ there. Of course, says I and off I went to do that in about May and am still doing it now, every Tuesday, even though I now have a volunteer family I visit at their own home and help out.

How could I not keep going to this bright and active little girl attached to her oxygen mask and tubes 24/7?  So we have ‘Debi-day’ each week and have the best fun. I do tire her out though, but she does love me putting her to sleep with my rendition of ‘Santa Claus is coming to town’, which superseded ‘Old Macdonald Had a Farm’ – thank goodness because that was getting boring!

Friends and family say to me – ‘oh you are so good to do this, but however will you cope if something happens?’ This is a real possibility because a bit of a cold or a chest infection is very serious for her.  I was present once when she vomited, hard, for more than an hour. I have seen her after her operations, covered in tubes and wires, and it is upsetting.  Well, if the worse case scenario occurred I will be inconsolable, there is no avoiding that.  And I will be even sadder for those lovely parents and siblings. But I will know that I have made a difference in a little girl’s life and that is so much more important than how I may feel! We will have sung and danced and played, and read stories, and swept the floor and acted like worms and dead cockroaches on the floor and cleaned windows and pasted paper and played on the ipad, and walked up and down that room a million times (with me holding the oxygen machine, and it’s heavy). She will have grown up, even if just a bit, and she will have lived life.

But I wanted to put some special things down on paper – those things that make me feel so good when I leave that room….

She was mostly in the cot all day when I first started visiting but she was soon allowed down on the floor to move around and I helped her learn to walk forwards (instead of sideways like in the cot). Now she says ‘floor’ as soon as she sees me. We don’t bother with a mat covered in a sheet – she barely sits still long enough in that 4 hours. We have learnt together how far we can get all her tubes to stretch if she can do without the feeding tube for a while. It gets us outside to see the sunshine or watch the rain or feel the wind. It gets us up near the nurses station to tickle their legs, or closer to the young girl over the other side so we can say hi.

She has experienced walking in bare feet on different surfaces – the lino, the concrete, the doormat. We try to run and jump just a little bit.

We practiced what it was like to have a thermometer under her arm, her oxygen stats taken on her foot, a needle in her arm or leg and vomiting into a bag (making appropriate noises of course). Now we practice on ‘dolly’ since she has started doing ‘home-play’ activities.

I taught her how to stand on the rungs of the cot using her arms to pull up, and how to climb on and off an adult sized chair safely. How to get onto the little slippery dip in her outdoor space and to hold on when we rock on the seesaw for many, many minutes singing ‘marjory daw’.

We laughed as we danced and sang a range of things, and got all the nurses and other children in the ward to join in. We wiggled on the floor (and I take up much more space than she does). Today I did a great impression of a dying chicken (a little similar to a dead cockroach but with wings!)

It took 8 months but she finally squeezed a peg enough to make it work correctly! She had liked my bulldog clips on the paper we used so I got something easier but it took a lot of practice to strengthen that grip. Happy days!

We put ‘baby’ into her own little bath and washed her carefully. Although she is almost three she has only fairly recently played ‘make believe’ creatively and she nurses that little dolly a lot.

But yesterday was so special. Firstly she so wanted to sweep and clean like another lovely volunteer does for us to make the outdoor area clean. So we had water in the doll’s bath. Then we went to the sink in the room to wash hands, and she could only just touch the flow of water with her fingertips, but was sooo fascinated with it. So I got a chair so she could kneel and we were there for many, many minutes while she just held her hand under that thin stream of water and just watched it. Not moving her hand, just feeling and looking.  Then I got a jug and we could hear the water sounds change as it got full and she could tip all that water out and do it all again. When I got a paper towel to wipe her arms (we were both getting a little wet) she just held that under the water for a very long time.  It was a lesson to me of mindfulness. She was concentrating so hard on something so simple. I realised, yet again, of another activity/sight/feeling/experience that she has not had a chance to have before with her unusual life (unusual only to us, not to her) in a hospital ward. But wow, I thought, we should all really slow down and just take time to just ‘be’ while watching water flow.

Then, after such a big morning she was tired and wanted a story in bed while waiting for mum to come. For the first time she really, really listened to me read several stories. Her concentration span had never been that great previously and she liked to flip pages and go back and forth. She certainly had her favourite book that we looked at each week but she never really wanted to look at books for long. But she really looked at the pages, the wonderful illustrations of ‘Edward the Emu’ and really looked at me, at my face and my expressions and reacted to my change of voice or tone. And she smiled the whole time. Wow. What a lot of joy I felt. What a difference I can make in such a short space of time. Worth every minute.  I get to have happy tears for a while longer yet……..

And when people ask me about this little girl and get ready to say ‘oh poor thing…’ I stop them and say, ‘no please don’t pity her’. I recognise that her life is different from ours, she must cope with procedures and operations, with the myriad of people that come in and out all the time and being sick and sorry sometimes. As adults we know the possible consequences of her condition and the many risks and the ultimate danger for her but she knows only life. Just life. And that is stupendous.

Pic: Debi

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