Our Little Monkey – guest post by Cheryl Minniss

When asked to write a short story about our son Mason and his journey I said sure, I can do that… I have been trying to put down the words for the last few months, it’s actually very difficult to put it on paper your son’s journey in such a short story, but I will try.

Our son Mason was born in Cairns June 14th 2000, our first born and he was perfect. He grew into a happy carefree child, always smiling and enjoyed life and was just the best thing that ever happened to us, we then had Rohan in June 2002, Mason was so happy to have a little brother, they did everything together, inseparable, they were best friends. Always by each other’s side, they hated to be apart. When Mason started school Rohan started kindy and they also loved that they were so close, Mason used to come over each break and see Rohan through the fence. As his first year of school came to an end, we started to notice a few things were changing about Mason,  we didn’t really take anything too seriously as we thought he was just changing and school was all new and he had to adapt.

As things progressed and Mason went back to school we were following up on a few things our doctor had asked us to look into as he thought something wasn’t quite right with Mason, he was changing and he seemed to be regressing in a lot of his behaviour. After many months of psychiatry visits and trying different learning techniques we were sent to a Paediatrician for further tests. This is where our lives changed forever, Mason was sent for an MRI and as that came back with a possibility of 2 problems, we were sent down to the Women’s & Children’s Hospital, in Adelaide (WCH) for further tests, to pin point what his diagnosis was to be. After further tests our Mason who was about to turn seven years old, was diagnosed with Metachromatic Leukodystrophy (MLD);  a very rare Metabolic disorder.  We were devastated, we were told the most horrible news that a parent ever hears, our first born son, our absolutely perfect child had a metabolic disorder that has NO known cure, and our son was dying right in front of us.

We searched the internet, worldwide for any hope that we could find to cure Mason. We joined a MLD Foundation Family chat page and learnt more about MLD, sadly none of the families had good news. We were trying so hard to hold ourselves together for both boys, and we could see Mason changing before our eyes, almost daily. His behaviours were going back to a toddler stage, and our younger son started caring for him, like an older brother does. Rohan became VERY protective over Mason, he was the best brother in the whole world.

We were put in contact with Sara, head nurse for Paediatric Palliative Care, at the WCH. Sara is a lady we describe as ‘an Amazing lady who we hope you never have to meet’, she is an Angel that walks amongst us. Mason was with the metabolic clinic at the WCH, and as MLD took over his body we started seeing less of his Doctors and more of Sara. We nursed Mason at home, our family room became our hospital room, but we did have a few long stays in the hospital, which we were thankful to have the Sam Roberts room to stay in as a family. But as soon as we were able to we came home, this is where Mason was comfortable in his own surroundings and with our family. There was many a time we thought he was ready to leave us and we had to start to prepare that one day our boy was not going to be here, this is an unthinkable thought for a parent, and also watching his little brother losing his best friend.

We were given a ‘Journey’ folder from Sara and she told me that when I was ready to start to read it, it will help you understand what happens when Mason is ready. I finally knew I was ready to read it, (Rob never read it) and it did help me to understand although it broke what was left of my heart I knew what to expect. As the months went by Mason was in so much pain and we just wanted him to stop hurting. Our child should have never had to suffer as he did, his life was shortened by a hideous illness and we couldn’t fix him. The day that Mason left us, was just perfect for him. I believe that he had everyone around that he wanted and he was finally  out of pain, no more medicine, no more Doctors or nurses, he was at peace.

I cannot thank Sara and the Paediatric Palliative Care Service enough, the care and compassion they show to families is beyond a job. The knowledge these amazing nurses and doctors possess with the care of a child who they know will not be with their family for long is just mind blowing. These people see things, no one should see a child go through, yet they hold themselves with dignity and confidence and continue to help hold the families together as they feel themselves falling apart. The care continues after the loss of the child with bereavement support and also a sibling’s workshop with a play therapist which is such a special time for these brothers and sisters. To know that they are not the only ones who have lost a brother or sister, is very important. Rohan enjoys spending time with the other kids and I know the workshops help him a lot.

One thing I will always remember is that at Masons funeral Sara and Mason’s metabolic doctor attended, and they both said it was nice to see Masons photo’s, as they always meet them after they have been diagnosed and never get to see the happy moments and the smiles. I had never thought of that before and now I always remember those words.

We felt the need to help out others in some way after we lost Mason, we knew what these families were going through and although no amount of money raised could change the journey they were about to travel, we could make it a little more comfortable for them. So we formed ‘4in3’ The Mason Minniss Fund, with the Women’s & Children’s Hospital Foundation. The name 4in3 means we are now a family of 4, just in 3 bodies. This is something our youngest son Rohan said the day we lost Mason and although he doesn’t remember saying it, it was the perfect name for our fund to honour and remember Mason.

We now fundraise to help comfort the families when they stay in the hospital. We have a couple of ongoing projects which help the families, the first is the ‘Masonette’, a comfort cupboard which is wheeled into a ward/room in the hospital and is filled with items of comfort that the families can use whilst they are staying in the hospital. They are allowed to take a lot of the items home with them, as we know even the smallest thing can be a memory that will be cherished forever.

We also help fund ‘Butterfly Baskets’ these are also filled with comfort items that the nurses can give a family when they are either staying in an area in the hospital or they can take them to the family at their home, sometimes a small gesture is like receiving a big hug.

We also deliver ‘Ro’s Holiday Hampers’ at Christmas to families of the palliative care service, who has a child with a rare disease, or bereaved families, this is a very special delivery at a time that the families are supposed to be celebrating being together.  Many of us, ourselves included just can’t face the shops and the crowds this time of year, so with our hamper being delivered it helps them not having to struggle to get to the shops, and pretend to be enjoying the festive season.

Our family is doing ok, we miss Mason EVERY single minute but we speak of him often.  Remembering special times which is lovely but also very painful, as his time with us was only short, ten years and ten months and four of those years he was very unwell. Sadly our memories are all we have now, but we feel him around us always.

As I try to keep this short I want to share that Mason had two favourite songs, these were songs that he always loved and sang and amazingly he chose these before he was sick but the words of the songs that became his life songs;

‘It’s My Life’ by Bon Jovi  and ‘Unwell’ by Matchbox Twenty

We miss our boy ‘ our Little Monkey’ Mason, this is a very short compacted note about our boy with a HUGE heart and even BIGGER blue eyes, who one day we will be with again, but until then I believe he will be around us always and take care of us from up above.

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The Soul Project

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The Soul Project  will be a collection of stories and poems written by other bereaved parents that have also suffered the loss of a child through illness, stillbirth, neonatal loss and early pregnancy loss.This will culminate in the Women’s and Children’s Paediatric Palliative Care Service (PPCS) 15th year of service. This book needs contributors for it to go ahead.

I will be on the look out for Beta Readers and other input for the book as well. The title of the book is yet to be decided.

*NB This book will be focusing on bereaved parents whose children have been patients or the families have received support from the Women’s and Children’s Hospital in Adelaide.

If you would like to find out more please sign up below to keep in the loop. Or you can email me direct jackie_barreau@live.com.au for more information on the submission process.

Gillard Govt slashes federal funding for palliative care services

This makes my blood boil…I don’t like to get caught up in politics but on this occassion I need to vent! Thanks to The Gillard Govt who have literally slashed funding of $1.6 billion to public hospital services this financial year. The $500 million worth of funding to the Palliative Care Program is due to expire at the end of June. Do these pollies have any idea just how this will affect families & more importantly patients. We are an ageing population, these services are a necessity, just remember there are children that also have terminal illnesses & need support through these services and organisations….what a bloody disgrace!

As a bereaved parent/carer, I know I speak for literally thousands of families that would be lost without these services.

http://www.liberal.org.au/latest-news/2013/02/25/palliative-care-patients-paying-labors-waste

http://www.michaelsmithnews.com/2013/02/theres-no-more-money-for-palliative-care-then-cut-something-else-you-horrible-heartless-reprobates.html

What do you think, do you have a family member currently receiving palliative care, and how would you manage without this fundamental right as a human, to die with dignity and with the right support and services in place?

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