Special Needs

The anger remains

Last night (Mon 25 March) I watched one of the most heartbreakingly sad programmes I have ever seen. ‘No Time to Die’ followed four families with children who have life-limiting conditions and the care they received from Laura Lynn House Ireland’s only paediatric hospice. As some of you will know, I am the very proud mum of a daughter with physical and intellectual disabilities, and while she does not have a life-limiting condition, I found the programme very hard to watch.

Seeing small children so fragile, needing extensive care, and watching their parents remain so strong and brave throughout everything stirred up a maelstrom of emotions in me. I posted this on Facebook just after watching the programme: “Having watched ‘No Time to Die’ and sobbed at the end of it I have a mixture of emotions churning me up right now. Relief that while our darling amazing girl has a significant level of disability, she does not have a life-limiting condition; guilt that I feel that way; enhanced admiration and love for the two families I know whose beautiful daughters use the Laura Lynn hospice; and anger. Anger that we have just ONE paediatric hospice in Ireland yet the banks have been bailed out to the tune of billions. Anger that those families and many other families of children with disabilities have to fight for services, have to campaign against cuts in their allowances.”

Usually such intense and powerful emotions subside fairly quickly, even a drama queen like me can’t maintain that level of angst for too long. But today has been different. The anger has gotten stronger, more intense. There has been a good level of media coverage in Ireland today of the campaign to open a respite centre in Co. Kerry, which is being spearheaded by the parents of Liam Heffernan who has Battens Disease. Liam’s Lodge will be the first respite centre in Ireland for genetic and rare disorders. The team at Laura Lynn House are working to raise funds to build another paediatric hospice.

And I am disgusted that these causes are having to beg – and that ultimately is what it comes down to – for funds and help from private individuals and businesses. (And if anyone is offended by my use of the word ‘beg’, I am sorry, but I have worked as a fundraiser for charities in the past so I know whats involved) Ireland – the Irish State, the Irish Government call it what you will have handed over bilions, billions of our money, OUR MONEY, to bail out the banks in this state. I am sick of hearing the argument this was necessary to ‘save’ Ireland. How many hospices could have built for that money? How many nurses would the Jack and Jill Foundation have been able to provide to families of very ill children to enable them to stay at home with their families? How many home care packages could have been put in place to help parents take their children home as in the case of Jovelyn. Actually the crazy thing is that it costs the State MORE to provide care in hospital to children like Jovelyn than it would to put such a package in place.

How did we end up in this mess? How? I’m angry. I’m so bloody angry. I hope that you are angry too. I hope that you will feel angry and moved enough to ask your public representatives to justify the lack of funding for the various organisations I have mentioned here. If you have a few spare euros (I know its a big if) maybe you’d consider donating them to any of these organisations – they all need your help.


One thought on “The anger remains

  1. Well said. It was a very emotional TV programme indeed. The pain that some families go through, but their amazing resilience shone through too. You are of course correct in all that you say here. What’s really astounding is that When a respite home is built in Ireland it is ‘built’ by the family of a seriously ill child who have gone through so much and want to help others. One word though, these homes need to be monitored just like nursing homes are .

    xxx Jazzy

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