Why Father's Day is extra special to hospice families
Northern Ireland's Children's Hospice has special plans to mark Father's Day tomorrow.
Dads visiting their very sick and terminally ill kids at Horizon House in Newtownabbey will spend an extra special day creating new memories to sustain them when their little ones are gone. Cards will also be presented to all the dads made by the children in what is a bright and happy sanctuary for families going through the toughest of times.
To mark Father's Day tomorrow, two local dads give their perspective on what it is like to cope with a child who is life limited and the role the Hospice has played in their lives.
‘Jordan’s already given me a card she made herself’
Kevin Jones (49), a bus driver from Omagh, is married to Clare (46), a former nurse who is now a full-time carer for their daughter Jordan (20). Jordan has the rare condition, Wolf-Hirschhorn syndrome. The couple have two other kids, Reece (17) and Codi (24). Wolf-Hirschhorn syndrome affects many parts of the body. The major features of the disorder include a characteristic facial appearance, delayed growth and development, intellectual disability and seizures.
Kevin says: "Jordan can't speak but she does know some sign language. She also has congenital heart disease and is only five foot high and five stone.She has had numerous heart surgeries since birth and her last operation was January 2014 when she had to have a hole fixed and a valve stretched and thankfully it went really well.
"Even though she has heart trouble she seems to have more energy than everyone else.
"She doesn't sleep and can be awake from 4am and sometimes can be up all night.
"She has no idea of danger, she is completely fearless so she can't be left on her own at all and needs round-the-clock care.
"Jordan was nine before she was diagnosed. She has a little chin and large eyes which are characteristic of Wolf-Hirschhorn but for the first nine years of her life doctors had no idea what was wrong and they were sending pictures of her all round the world to other consultants to try and get a diagnosis.
"It is only in the last couple of months that we heard of one other person in Northern Ireland who has it.
"It is caused when a tiny chromosome a million times smaller than a pinhead detaches itself and then attaches to another chromosome. Jordan wasn't expected to survive and was baptised shortly after her birth in hospital.
"It was pretty horrendous at the time as she had two defective heart valves and had to have open heart surgery at six weeks old.
"She is very unsteady on her feet but she soldiers on. Everything is a great laugh to her, she laughs all the time.
"She has this thing about dressing me. If I am going out and I go to the shower, she will go and pick out all my clothes and leave them on the bed, she even picks what shoes I should wear.
"She goes to the local technical college three days a week and a day centre two days and has a wee circle of friends there.
"Jordan has been going into the hospice for respite care twice a year for the past four years and she just absolutely loves it.
"She is getting to the age when they won't be able to take her anymore and we are dreading that.
"When we bring her to the hospice she just points to the door as if to tell us to go, this is her time and she wants us out of there, that's how much she loves it.
"I always wear my hair shaved close to my head but three years ago I decided not to get my hair cut again until my 50th birthday to raise money for the hospice.
"I'm 50 on June 3 next year and can't wait. I have a pony tail down my back and I hate ponytails on men. There are so many things Jordan won't let her mum do which daddy has to do. I have to brush her teeth in the mornings and she will only let me clean her glasses.
"Jordan has already given me a Father's Day card which she made herself."
‘We believe Horizon House is why Caoimhe’s here’
Martin Murphy (53) from Newry runs his own electrical business. He is married to Siobhan (53). Their-13-year-old, Caoimhe, has the rare condition Joubert's syndrome and was not expected to survive beyond the age of three.
Martin said: "It was touch and go after Caoimhe's birth. Every time she was being fed she turned blue. She spent the first six months of her life in intensive care. When they told us Caoimhe had Joubert's syndrome we hadn't a clue what it was.
"We got on the internet and it was the worst thing ever.
"It was so rare that even the professionals here had to learn about it.
"They said we'll be lucky if she survives three years. She can't walk or talk and she has sight and ear problems but she loves school and she loves her fashion and music and going shopping.
"It has been tough and we are not the same people we were but because of Caoimhe, our eyes have been opened - to people, to circumstances, to stories, to care facilities - and most of all to the goodness, the generosity and the bravery that you encounter.
"A palliative care nurse told us about Horizon House and for me hospice was a place to die. But then they took us down to see the building. It was a bleak rainy day. But once we got to Horizon House, we got a tour of the whole place, really started to take it all in, all beautiful and colourful.
- and what I really liked about it was this isn't a place to die, it's Horizon House. There was a walled garden. A pool with water running down it. A place for families to stay.
"Everyone was friendly and professional, and we came out with a different attitude - with hope - and we never looked back.
"Our heroes now are people in there, unbelievable people, staff and the families and children.
"Caoimhe has been going to the hospice for two nights' respite four times a year since 2004 and it is her wee holiday, something for her to look forward to. She loves it.
"To me the Hospice is what peace and quiet and decency is all about.
"With Caoimhe's prognosis, we never thought we'd be here today and we believe Horizon House is the reason why she is here. We are very lucky to have her and every day is a bonus now."