In 2001 in Limerick, a remarkable little baby, Sean Holland, announced himself proudly to the world. Brimming with joy and love, Sean’s devoted parents Pearl and John along with Sean’s 3-year-old adoring sister, Niamh, had no idea then that this gorgeous, new-born infant was about to single-handedly chart their family’s life’s journey. Six months later, Sean was diagnosed with life-limiting Lissencephaly and a spectrum of other very serious conditions. He was given two years to live.
But the family soon began to set their own standards and to negotiate a frustrating and difficult pathway through the healthcare system by turning to the only assets they had – self reliance, belief in Sean, the love of family, friends and neighbours and by doing what they thought was best for their wonderful son.
Meeting them in person, it’s clear they’ve worked hundreds of minor miracles. And so has Sean himself. Twelve years later, he is still living out his very full life, his winning personality proudly breaking through his severe physical and neurological disabilities. Everyday he continues to define himself: a fanatical Munster supporter; a serial visitor to Disneyland; his Gaelic Footballing sister’s biggest fan; and so much more.
The day the consultant diagnosed Sean, everything changed. The Holland family began to experience vastly different standards and cultures of palliative care – the good, the awful and the loving. They met the most caring and understanding professionals but they also had a number of shockingly insensitive and professionally incompetent encounters. John describes one such story :
“My sister had advised me to write down my questions before meeting the consultant. I was in the beginning of my list when Pearl got very upset. I stopped for a minute to comfort her. When I went to get him to continue, he had just disappeared, no apology or explanation. He had just told us that ‘Sean was going to die. Get on with our lives. Leave Sean in hospital’ and then he leaves us hanging with that insensitive news.”
The Hollands have experienced the best and the worst of care at every milestone – from diagnosis, prognosis, to having to become de-facto medical experts, to hospital care, home care, respite and planning for the future. They have their own common-sense definition of quality palliative care:
“It’s a partnership. You need people who are prepared to listen and give you time. You need a really great GP, which we’re so lucky to have. We’re not looking for heroes who get everything right, we just want competent professionals and the system to have Sean’s best interest at heart. And a bit of human empathy and sensitivity.”
Sean’s care regime is relentless – 24/7 every day, every night. He has multiple problems like scoliosis, constant severe congestion of his lungs, he’s had seizures, strokes, chest infections, pneumonia and other difficulties. And the wondrous thing about this family is that they talk with natural ease about the fun they have together. The joy they get from a simple smile. The craic they can still knock out of life. Blissful images of the family dancing in the living room with Sean laughing in their arms.
Because of the uncompromising care schedule, siblings often have to cope with less parent time. But John and Pearl are so proud of their 16 year-old daughter Niamh.
“She’s experienced things we wish she didn’t have to. One day she was in the car with me when Sean stopped breathing. She saw me banging on his back trying to bring him back to us. She saw a woman giving him CPR on the side of the road. She saw him turn blue and ashen. She is an absolutely super, super girl, daughter and sister. And on top of that, she’s a fantastic and skilled carer for Sean too.”
John is philosophical about their experience:
“Anything you do out of love won’t be wrong. There’s no manual on it. So I’d say to families today – just go with your gut and your knowledge of your child. But equally if you don’t like your consultant, get rid of him or her and move on to better things because there are fantastic professionals out there.“
As the interview finishes I’m reminded of something John said in the very beginning of our chat:
“When your child is first diagnosed, you bury your dreams and later you need to imagine new dreams. Because every man has a dream about his son – that he’ll play hurling for Limerick, rugby for Munster. That he or she will be a doctor, a musician, whatever you want your child to be. So you have to go – that’s not going to happen, so now I have to form a new dream. I have to bury that old dream.”
The Hollands have done just that. They’ve turned a nightmare into a new dream for Sean. And it’s almost as if Sean has had a dream for them too – because as John attests:
“We have a brilliant child who has given us so much, who has made us what we are.”