The term ‘life-limiting’ is infused with sadness, worry and heartbreak. But most families who have children with a ‘life-limiting’ condition turn that diagnosis on its head. And if ever a couple embodied the inherent contradiction between what the words mean – and how a family copes – it's the Murphys.
Siobhan and Martin Murphy heard the phrase used along with the words ‘Jouberts Syndrome’. They were receiving news of their infant daughter Caoimhe’s diagnosis. What followed was a rollercoaster journey of heartbreak, worry and round-the-clock care. But for Caoimhe, her condition was anything but life-limiting. Watching her play, listen, observe and communicate, ‘life unlimited’ seems far more apt.
Only one person can define 12 year-old Caoimhe Murphy. She does it herself. After a couple of hours in her warm company you get the impression that, in many important ways, Caoimhe controls life, despite life’s sometimes cruel efforts to control her. Her priorities revolve around much more mature interests. Computers, going places, music, dancing, meeting people. And of course clothes and fashion.
But the most important magnetic force in her life are her marvelous parents. Martin and Siobhan, and her extended family, neighbours and friends.
There’s no doubt that the symptoms and impacts of Caoimhe’s life-limiting illness affect her profoundly. But her remarkable family ensures that these don’t define her. Caoimhe is dependent on her parents Siobhan and Martin for all her needs. She is unable to walk, she has no speech, and has problems hearing. But Caoimhe can move around in her walker. She has developed her own intriguing language through sounds and signals. She is a busy and bubbly girl.
Like many other parents in this situation, Martin and Siobhan had to quickly come to terms with so much so quickly. Siobhan recollects:
“They came and said she had Joubert’s syndrome. We got on the internet and it was the worst thing ever. It was heart breaking for us. Her particular syndrome is such a rarity that even the professionals here had to learn about it.”
For Martin their life is measured in milestones:
“They said we’ll be lucky if she survives three years. So could you imagine then what it was like when she first went to school? – fantastic. Now she’s into secondary. Her First Communion, could you imagine her Confirmation? Could you imagine when her sister got married and I was taking her into the cathedral in her white dress?”
But Martin remembers many dark days:
“It was touch and go in the beginning. She ended up being ventilated and in intensive care. She had heart problems too.”
The family’s traumatic journey has left scars but it has also brought thoughtful insight and optimism:
“Were not the same people we were”. Martin’s decription is not a casual one – he means it in quite a profound way. This simple phrase captures heartfulls of drama, emotion and history over 12 years.
“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.” Siobhan agrees:
“We’ve done things and coped in a way I never thought was possible.”
There’s a natural anger that developes – a sense of terrible unfairness that any parent would feel on hearing their child won’t live as long as most others. Martin describes a cathartic moment:
“I really felt extremly angry about it all. You just don’t know what you’re doing. Two days before her heart operation I drove down to see the cardiologist. I was furious with everybody and everything. I was shouting in the car. I had really lost it. Then, suddenly, a serenity came over me, like okay Martin, do you want to micromanage everything? Let them get on with it, and we’ll do our bit. The whole thing lifted. In retrospect, it seems like someone or something was looking after me.”
Siobhan talks about another milestone:
“I was approached by the palliative nurse asking us how would we would feel about the hospice [Horizon House]? For me hospice was a place to die. But then they took us down to see the building.” Martin takes up the story:
“We got a tour of the whole place, all beautiful and colourful. 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. Our heroes now are people in there, unbelievable people, staff and the families and children.”
So what of the future? Martin and Siobhan are comfortable with the question: “It’s taking each day as it comes. Valuing life. And appreciating that Horizon House is one of the most significant reasons as to why Caoimhe is twelve. She loves it there. She gets so excitied when we go there.”
Siobhan adds: “It’s good for everyone. It’s just four or five times a year but it makes such a difference. The fact that I can sleep soundly tells you how much confidence we have in them.”
Martin has a parting shot filled with pride and generosity: “12 years and there’s been enough tears to fill a swimming pool. But I’ll tell you something – whatever it is that has Caoimhe here today, I’d love to bottle it and give it to everyone.”