Our son, Hugh, was born on 13th December 2012 and from day one of his life he was in hospital.
We live in in Dublin and we were able to love Hugh in person everyday of his life (he was easy to love).
Even though we were stressed and worried and he was very brave for a long time, we have no regrets about our lives together. We didn't want him to go and he didn't want to leave us and clung to life but I accept that his was a natural life of 247 days.
We could have walked away and "moved on" with our lives but we can’t forget what we saw and felt.
In Temple Street hospital – the real family story
In hospital, we saw many families who for financial reasons, are not on the same journey.
I believe that everyone wants to do the best for their children but some need support.
Many parents are exhausted - they are sleeping on the floor or in a chair and 14 lucky parents live for often months at a time in the attic with no sitting room or privacy and a communal wash machine.
I am a very proud Dubliner and I saw people who began to hate Dublin - the loneliness, the lack of help. They felt forgotten in their communities and really lost in Dublin.
This is not the city that I know, and I want them to know that we do care that they are having a really tough time, and that while we can't make their child get better any quicker, we can walk part of their journey and give them a bed, a hot meal, a cup of tea and a garden.
When your child is in hospital and has to be transferred to Dublin, the government gives you 10 euro a day to live on. Anyone without a medical card gets no support
This means that a lot of children - more than you would believe- do not see any one from their families for days at a time.
It is hard to forget the image and sounds of children who are waiting for their parents to walk through the door and the knowledge that it was Monday and that they wouldn't be back until Friday at the earliest.
I found it really hard to walk past cots of little children with outstretched arms on the way to my son.
I could only hold one child and for everyday of his life - that was my wonderful son Hugh- but now that he is at gone, I cannot forget. I believe that people care and would not want this to happen.
The beginning of Hugh’s House
We decided that the money we were prepared to spend freely on Hugh should be spent on those who shared his journey.
I don't have to worry about Hugh anymore- he is in God's care now.
Goodness is infectious and it doesn't respect walls, it oozes out of it and sticks and we hope that the garden, the repairing of the facade as well as the hospitality on the inside will help to restore more than those who walk through the doors either family of a sick child or a volunteer.
We want the families living this nightmare to know that we care about them and that they aren't being punished.
We want people to know that we care, we are sorry that they are in such a tough place and we want to smooth the road to help along the journey
We want them to know that even though they are living together they are still a family and we want to protect that knowledge. We want to cook a meal for them each day and have a table so that they can eat together in their room if they want to - (a temple street community).
The families eat out every day in the chipper as the restaurant is only open for lunch and not at the weekend and this becomes really expensive.
All parents have to pay for tea and coffee so again we want to provide this free of charge- not just to those who are staying in Hugh's house but for every parent in the hospital. We are looking for volunteers ideally through their work to come once every few months to have a tea and coffee station in the garden
Since the 15th of May, we have had families staying in the house. We have six bedrooms some of which sleep up to four people. Last weekend, every room was full . There were families able to spend time together- a few even got sun burnt in the garden.
We are hoping to refurbish the bathrooms at the moment.
There is a garden at the side, accessible directly from the street, created by Aer Lingus in May 2015.
This outdoor space is important because our son loved being outside - lying in the sun even in a conservatory is a million times better than being in a ward.
It was hard to see children whose treat for the day was going to the vending machine in the basement because there was nowhere else to go.
Theo and Fred, aged 1 and 3, visited their brother every Sunday morning when the hospital was quiet, and it was the highlight of Hugh's week.
He really loved his brothers they were his heroes; to have a place we could have gone even for half an hour would have been amazing.
The occupational therapists and physio’s will also use it to encourage children.
There is not much stimulation in walking from one end of a room to the other but to reach the swing is a different feat.
Aer Lingus got involved as we heard through one of our work colleagues we heard that once a year Aer Lingus as a team, take a day out of their lives and make a difference. For 2015, they adopted us!
They arranged for their staff to meet at work and travel together to the area. They worked non stop all day and in one 8 hour period( with the magical help of Difference days) transformed the garden from a derelict site into the pictures you se below.
When the children came from the hospital at 5pm to just start playing, I don’t think there was a dry eye in the house. This garden is where you can just be a child again and just play.
See the pictures from this day in the Album “Make a Difference Day” in our photographs
This garden now means that children who are in the hospital have somewhere to go even for 20 minutes that is safe. Children who travel every week for dialysis can wait somewhere fun before they make the long journey home.
What can you do?
Everyone can make a difference through: • Donating time (even three hours would be amazing). • Gifting unwanted household items (see our list below) • Gift skilled trades: painter/decorator, electricians, plumbers • If you would like to get involved with your working colleagues to organize a picnic, a BBQ, or come as a team for the day, send us a private message.
Every hour helps!
Everyone involved has received more than we have given on every step of this journey .