And fair enough, you must be a little mad to want to work with very sick children. But amazingly, although that part of our work is really difficult there are other aspects that make it so much harder. Let me explain using some real examples…
Jabu sent me an SMS today. 2 weeks ago she lost her 4 year old son to a debilitating kidney problem; he died very comfortably with dignity at home with the help of Umduduzi. She is missing him dreadfully. But the loss goes beyond this heartache to absolute destitution. You see children with chronic illnesses that require 24/7 care are eligible for a government grant of R1400. But when the child dies the grant goes with them. Jabu had to give up her job to care for her precious son. Now she is stuck, jobless, starving and grieving.
Cindy lost her 13 year old son 2 months ago to advanced cancer in the care if Umduduzi. She has an alcoholic husband and an older son who is always in trouble with the law for drugs. She too had to give up her cleaning job to care for her child and has not been able to find work since he died. Stuck, starving and grieving.
I could go on but won’t not only because some of you have already stopped reading but because just writing about these families I have tears running down my face. The list is endless. We are left feeling so helpless. Of course we buy groceries her and there; providing what we can when we can, but these are not long term solutions. As a palliative care organisation we have to remain focused on palliative care; we could get completely swallowed up into a feeding scheme and lose sight of our goals. As an organisation with rare expertise we cannot let that happen.
I can hear compassion-fatigued and cynical friends saying – the government should be doing something. Yes, of course they should but these are people that no one has ever really thought about. So vulnerable and marginalised.
We do our best to network with other NGO’s providing different packages of care but would be grateful for any ideas, helpful ways to support these grieving parents.
If you are short of ideas but have a little cash to donate, that too is also being part of a solution. No donation is ever too small.
As Tim McAvoy said, “those little things can add up to a big difference”…