Burning the Laptop?

I have just realised that this is the first time I have written this year. Oops, it is already April.  I guess I am trying to work out where the time went? Or maybe I am just tired. People are tired. Emotionally drained. Aren’t you just so tired of being tired and busy?

I’m having such a busy year. In fact that my ADD is playing up something terrible. I managed to accidentally book myself to run a workshop in Johannesburg, at the same time that my BFF would be on holiday in Durban, at my house! Today I am on a flight from Durban to Jozi but only just… Why? I managed to book the flight in the wrong direction. And my poor laptop is bearing the scars; I burnt it on a candle while working in a hotel restaurant. I now have a permanent black mark on my screen! There has to be a GIF or a meme for that somewhere.

The reality is that my situation is not that different to everyone else. Everyone is busy. Everyone is tired, perhaps apart from those awesome folk who like kale, jogging and yoga with some mindfulness in between.

The problem I am facing is the reason I am busy. I am busy because I don’t get to just do my job. At Umduduzi, Tracey and I spend most days working with seriously ill children and their parents, attending advocacy meetings, teaching health professionals and medical students and then we go home and come up with fundraising ideas.

I find myself wanting to yell “but I am just a doctor.” Too bad Julia. This is a path you have chosen (and here I hear my mother’s voice) because you believe in the work you do. And I really do, passionately. However, it is not sexy work. It’s not feel good stuff. No one wants to talk about seriously ill children that may suffer and that may not get better. No one really wants to think about it. I don’t even like talking about it. It is a serious conversation killer…Picture the scene:

Stranger: So what do you do?

Me: I’m a doctor.

Stranger: Wow, that’s amazing. What is your specialty?

Me: Ahem, (clears throat) Well, (pause) I provide care and support to seriously ill children, most of whom won’t survive.

Stranger: oh, oh, wow, that’s amazing (strained tone). You must be such a special person.

And so, fundraising, which is always difficult, becomes even more so.

Sadly, one of the communities that has supported us enormously in the last 5 years, has been on the receiving end of tragedy after tragedy. Emotionally draining because everyone cares so much. Everyone wants to help. And yes people are busy; very busy with their own lives.

Where it ends in a beautiful crazy country like ours, who knows, but NGOs like ours need help. While we are delighted with every toy and stationery item we receive, we need money. We need to give our team members a salary raise, we need to hire more staff. Bottom line, we need money to provide our professional service.

We can look to the government and say, “You should be funding this.” They know. And contrary to popular belief there are some beautiful people doing a phenomenal job in the Department of Health. And slowly things are starting to change but there is a long way to go with a massive list of competing priorities.

So the challenge is out there. Here are 5 ways you can support your chosen NGO: (preferably us!)

1)      If you read this and you don’t have a MySchool card. Get one. It costs you nothing and you can swipe it at a number of stores. https://www.myschool.co.za/

2)      If you have a spare R100, a month donate it. Sign up to an organisation that you believe in.

3)      If you don’t have spare cash but like spending time with friends, host a small ‘Crumbs for Comfort’ event. http://www.umduduzi.co.za/crumbs-for-comfort/

4)      If you have spare cash and like spending time with friends, hold an expensive ‘Crumbs for Comfort’ event. http://www.umduduzi.co.za/crumbs-for-comfort/

5)       And at the very least, get vocal – share the posts on social media, like every post you see and tell your friends.

With that, I am going to bed and really hope that I have booked a flight in the correct direction tomorrow!

Perspective

Mesmerised.  The depth, the width, the breadth. High above the ocean, flying home after a frustrating 24 hours of airports, bad service and little irritations. But that’s all noise. Up here it’s so quiet. Just the hum of the plane and the most spectacular views of coast, sea and clouds.

The sun is rising over a dark grey ocean.  Flickers of silver, yellow and gold dance on the water below me.

I feel so small. So insignificant.

‘So’, you are thinking. ‘She has finally lost it’.

Well don’t panic. It’s a short flight and soon I will be landing back in Durban where this quiet moment of peace and reflection will be nothing but a distant memory swallowed up in the chaos that is my life.

My taxi driver in East London had never been on a plane. He said, “my place is here on the ground. When something bad happens on the road you can get out the car and run. Where are you going to go when you up there?” We both laughed and I thought how lucky he is to not know what it is to have a flight cancelled with no explanation, no apology; to not spend hours and hours waiting for better days at an airport.

Seriously? I love flying. It is a privilege to see the world from a different perspective. To be stuck in a chair with nothing to do and no where to go trusting in a huge metal bird and a pilot to get you where you need to go.

I read an article yesterday – the key to happiness is acceptance. Very zen. And yes, I had a lot of time hanging round airports… It made me think of a beautiful family that have just lost their precious child to cancer. Their devastation and agony is very apparent and yet I would not call them unhappy. During his illness they accepted their situation and managed it with grace and skill, ensuring his last weeks were filled with a lot of love and even fun.

Talk about perspective.

It doesn’t mean I don’t get to be frustrated by poor airline service and bad communication, but some things just are what they are.

Kind of makes me think of this well known prayer…
OLYMPUS DIGITAL CAMERA

 

 

 

Palliative Care?

I am often asked, “so do all the children you support have cancer or HIV?”

This fascinates me as there are so many other conditions requiring good quality palliative care. I am sure it has something to do with the publicity that cancer and HIV get worldwide.

Next month is both World Cancer Day, celebrated every year on the 4th of February and International Childhood Cancer Day on the 15th. There are awareness months for childhood cancer, skin cancer, eye cancer, cervical cancer, breast cancer, bone marrow stem cell donation and Leukaemia; a week for CANSA care, and even a day for cancer survivors. And lastly let’s not forget National Bandana Day.

Locally, there are over 11 non-profit organisations dedicated specifically to support children with cancer and their families.

And while this is truly wonderful – a lot of good people raising funds and doing amazing work – there are children suffering with other conditions receiving little or no support at all.

So as Umduduzi – Hospice Care for Children, Member of PatchSA (http://patchsa.org/), our aim is to raise awareness for palliative care and for all the children that need it.

“Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.  It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological and social distress.  Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.  It can be provided in tertiary care facilities, in community health centres and even in children’s homes.”
World Health Organization 2002

So the children we see range from newborn to 18 years of age. They have a variety of conditions including congenital or inherited disorders, organ failure, prematurity, neurological deficits, infections and of course HIV and Cancer. Every child with a condition that causes symptoms needs some form of palliative care whether it be emotional support or pain management. And regardless of the condition, their parents need support too. We may not be able to prevent all illnesses but through palliative care we can offer a different strength and hope.

Please help us in 2017 to raise awareness, because when individuals understand what palliative care is and its benefits they can start to ask for it and only then will the supply need to meet the demand.