She has defied the odds and is still battling 10 nights later. Her care needs are that of an ICU set up and are relentless but she is strong determined and by no means ready to go anywhere. While she has fight in her, so do I.
The home care package in place isnt suffice and covered in red tape. When the agency cant fill nights we are abandoned. I've other nurses available to take over and fill the gaps but the funding isnt transfered to the nurses willing and available.
Daisys needs are so great now we require 24/7 nursing care it's just not safe trying to do it on my own without help. We have never, ever been able to rely on the system and at this point in Daisys life I want to finally be her mum, not her Dr, nurse, physio, educator, OT.
We just want to spend as much time with my little warrior without all the stresses and worries associated with dealing with the HSE and disgraceful agency who have been unbelievably unsupportive. Time is so so very precious. I've battled relentlessly for the past 6 years and 11 month to advocate for daisy and at the hardest time in our journey when everything should be set up to support us I discover that end of life care in the home doesnt exist for children. Our ladies Hospice Harold's cross are involved but because daisy is a child its an outreach service. Knowing there is a pallitive dr at the end of the phone to help and advise is amazing but its help in the home we are so desperate for.
So this is my plea to the irish people..... the government dont care but I know you do. I can hire a nurse for €16 an hour... that's €384 a day. Something a carer on €109.50 a week can not facilitate. My family arent in a position financially to cover costs and a loan is never available to someone considered "unemployed" by the banks. Credit union are amazing but I'm already paying a loan there needed to help out with nursing in the hospital last year.
I'm putting my heart on my sleeve and my pride in a box.
Please if you can financially assist in even the smallest way I'd be forever greatful.
A butterfly does not measure months but moments and has time enough. Help me help Daisy.
- Miriam C
- Dee Obrien
- Therese O'Donoghue
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