Making precious memories when time is so short

Limousines, cheering fans lining the red carpet, autograph hunters, photographers – there will be more than a touch of Hollywood about LauraLynn’s “The Oscars” next Saturday (March 24th).

Eight families are due to see for the first time films they have devised and starred in on the big screen, before coveted gold statuettes are presented in what is sure to be a packed auditorium at the Odeon Cinema in Charlestown, Dublin. While each family has created an individual movie that reflects their own passions and personalities, the common bond is that the starring role is played by a child who has a life-limiting condition.

Now in its third year, "The Oscars" are the biggest family-support project organised by LauraLynn, the children's hospice. It was a concept dreamt up and developed by play therapist Michelle Hartnett.

The beauty of the annual event is in the details: from the collaboration of professional script writers and Windmill Lane Recording Studios in producing the short films, to the "mammies" being treated to fake tans, hair stylists and make-up artists before the ceremony, courtesy of Oscars host Melissa Carter of Cocoa Brown. Limos will be laid on, girls from Mount Anville secondary school will play the part of fans along the red carpet, thee will be professional-looking film posters in the cinema lobby and a green room for the stars.

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The rest of the year there are few treats and little glamour for families caring for a child with a life-limiting condition. Their daily reality revolves around coping with stamina-sapping healthcare, often with very limited outside help, and meanwhile trying to maintain a semblance of normal family life for siblings. There are 3,840 children with life-limiting conditions in Ireland and about 350 die each year, most within the first year of life.

Apart from its end-of-life services, LauraLynn excels at not only providing a practical and emotional escape from very difficult domestic lives through respite care but also at offering opportunities to make precious memories when time is short.

For Niamh and Gerry Ryan from Portlaoise, and their twin sons, Liam and Sean, the hospice in Leopardstown, south Dublin, is the only place they can go now for an overnight stay. The boys, who will be 10 in June, were born at just 26 weeks and complications from their early arrival left Liam with quadriplegic cerebral palsy.

“He is non-verbal and doesn’t have any functioning use of his hands or legs,” explains Niamh. He is in a wheelchair, needs to be tube fed and is put on a BiPap machine at night to help keep his airway open.

In contrast, Sean is “blooming”, at Holy Family Senior School in Portlaoise, and is very intelligent. “It’s incredible really the difference,” Niamh remarks, “but we would argue that Liam is very clever too, but in very different ways”.

Full of mischief

Liam, who attends Kolbe Special School, also in the town, is a happy, content child, full of fun and mischief. "He has a great giggle – his whole body vibrates when he is laughing.”

Initially, the Ryans resisted the idea of availing of LauraLynn services when it was first suggested to them in 2013, after Liam had spent 3½ weeks on life support in Temple Street Hospital in Dublin. Encouraged by his paediatrician to consider LauraLynn, the Ryans wondered if the medical team knew something they didn’t. “We just weren’t in a place where we could get our heads around that – you automatically think LauraLynn is a hospice and all the connotations that come with it,” says Niamh. But, by April 2016, they decided they would at least go and see what the place was like.

“From that very first day, we walked out thinking ‘when can we come back?’ We couldn’t believe we had been putting it off. It is just incredible. It opened up a whole new world to us – it really did.”

Next Saturday is a night the Ryans have been looking forward to for months, having leapt at the opportunity to make a film together. Invited to meet a professional scriptwriter last November, they had great fun, Niamh says, coming up "with a crazy movie plot" involving a mish-mash of Star Wars, Ghostbusters and ET. The premise was the family had to rescue ET and that job fell to Liam in his wheelchair.

After they had been sent the finished script, the film was shot by Hartnett and volunteer co-ordinator Lorna Collins, both in the family’s home and in Liam’s school, which meant his friends and teacher got in on the action too. The raw footage was given to Windmill Lane Recording Studios where the film was finished off with enhancement through additions such as music and special effects.

It was a rare activity in which all four of the Ryan family could get involved. Now that Liam is too big for using baby-changing facilities, they generally don’t go further than within about an hour of home “because if he needs to be changed, there is nowhere to do it”, says Niamh. “I refuse point blank to do it on the bathroom floor, it’s not dignified.”

But as parents, they never want Sean to resent that they can’t go places and do things because of Liam. “Although in reality that is the case,” says Niamh. “You are trying to make sure you give time to Sean. That is where Laura Lynn is brilliant because it allows us to do things with Sean that we couldn’t in all honesty do with Liam.”

But in this case, Sean knew that if it wasn’t for Liam, they wouldn’t have had the chance to become real-live film stars.

Like a number of other families involved in The Oscars, they will stay over in LauraLynn this weekend, which is always a real treat for Niamh.

“When you’re staying there you can just be mammy. You are not doing the nursing that you are doing all the time at home.”

Ceremony

Talking ahead of the ceremony, Niamh says the whole experience has been “all about making memories, without a doubt, because you don’t know what is around the corner, as much as you don’t want to think about it”.

Their philosophy, she adds, is “let’s have this fun now, while we can”.

The Adams-Kelly family in Co Galway, who participated in The Oscars last year, have been drawing on the well of memories ever since.

“The experience is just amazing and gifts you with something beautiful to talk about,” says Kierra Adams-Kelly. “It is lovely to not have your stories just about the negative, the medical or lack of support.”

She and her husband John have three boys, William (14), Arthur (11) and then Alister, who has defied all medical expectations to celebrate his sixth birthday last January. Born without eyes, Alister had heart surgery at three days old, spent his entire first year in hospital and some of his second too. It was at that stage the Jack and Jill nurses caring for him at home referred him to LauraLynn, which had started expanding its services beyond end-of-life.

“He doesn’t eat, talk or walk,” says Kierra. Other complications have included seizures from the age of two, severe respiratory problems and a gall stone – but Alister has weathered them all.

“He is complex but a lovable rogue,” she laughs. “He has a few sounds and he loves music.” While his health is good at the moment, “it can all change in a heartbeat”.

The making of the film Adventures with Alister last year was a fantastic chance to get the two older boys to do something with their younger brother, says Kierra.

“The boys miss out on so much but to have something they can experience – and they can only experience because of Alister – makes it more magical. They know their friends can’t do this. They still talk about it.”

Having shot the film in LauraLynn, they could never have imagined what the Oscars event was going to be like. “The lads and me had never been in a limo - and there was Alister lying out in the back.”

But the best was yet to come – hearing the girls lining the red carpet clapping and shouting Alister’s name, and presenter Melissa Carter greeting the family’s arrival.

“Alister’s reaction was unbelievable because that is what Alister loves – praise, pantomime. He was in his element in John’s arms, so happy hearing his name and the clapping and the cheering. He was absolutely beaming – it was just amazing.”

Then they walked into the cinema and came face to face with themselves in professional film posters in the lobby.

“You were just tearing up but smiling,” says Kierra. They weren’t to know then that there were tough times ahead, as she was up in Dublin with Alister in hospital from last August to October and John, a farmer, had to hold the fort at home with the two older boys.

Happy occasion

“It’s a sad reality,” says Kierra, that her phone is full of photos of Alister’s rashes and swellings to bring into medical staff, so it was so good to be able to also have nice photos of a happy family occasion, including a video clip of those red carpet moments that Carter sent her.

The film poster is framed and stands in the sun-room, close to the kitchen table in their Loughrea home “so everyone sees it”, while the statuette and programme are on a shelf in the sitting room. They’re constant visual reminders of what was the best of times.

This memory-making is the hidden side of LauraLynn, Kierra suggests, and people don’t realise how important it is. She relished that they could bring extended family to the Oscars so they could participate in a highly enjoyable event where the focus was on Alister in the most positive way possible.

“The knock-on effect,” she adds “has been amazing.”