Picking up the pieces with grace
Grace Harper – the only pupil in her school who uses a wheelchair – is a popular little girl with a very full life, writes MICHELLE McDONAGH
WHEN GRACE Harper’s parents found out that their baby had been left with physical disabilities after contracting viral meningitis shortly before her first birthday, they struggled to come to terms with what was happening to them.
“Among all the supportive literature we were given at the time, one story stood out and helped me to understand the journey my family was undertaking,” says Grace’s mother, Susan Dennehy.
Welcome to Holland compares having a child with a disability to planning a holiday to somewhere sunny like Italy only to find you have actually arrived in Holland instead. This is not where you expected to go in life, and you need to readjust your expectations.
“Once you get over the initial shock, you start to realise that Holland is perfectly lovely in its own way,” Dennehy explains.
Written by Emily Perl Kingsley in 1987 about having a child with a disability, the essay Welcome to Holland is given by many organisations to new parents of children with special needs.
Dennehy, a freelance radio producer, has taken the title for her new radio documentary which follows Grace (now eight) over a two-year period while she makes the big move from the Central Remedial Clinic (CRC) in Clontarf to her local Educate Together school in Grangegorman, where she is the only child who uses a wheelchair.
Grace was perfectly healthy until shortly before her first birthday in May 2005 when she suffered a serious convulsion caused by viral meningitis.
At first, it was touch and go as to whether the baby would survive, but she appeared to make a good recovery and was quickly released from hospital to the relief of her parents and older siblings.
“However, that was only the beginning of it. Grace turned one in May and over the course of that summer, she began to deteriorate on us. Very slowly, she lost all her abilities.
“She started to get weaker and slump on one side. She stopped feeding herself and lost the few words she had like ‘mama’ and ‘dada’.”
Grace was readmitted to Temple Street hospital for a series of neurological tests which showed up shadows in the white matter of her brain, where communication between different parts of the brain is co-ordinated.
Although it was felt at this stage that Grace had a metabolic disorder, there was no diagnosis.
However, her parents were given the devastating news that because her condition was degenerative and she was getting weaker all the time, she could be gone within a year.
Dennehy gave up her job as a full-time radio producer at RTÉ to stay at home and care for Grace seven years ago with the support of Temple Street hospital’s physiotherapy, occupational and speech therapy, and social work services.
“One day, while I was feeding Grace, I noticed something different about her. Her head, which had slumped forward, was up. It was remarkable to see. I rang my husband straight away to tell him.
“Since that day, Grace has made tiny steps of gradual progress in her abilities ever since.
“Luckily, it turned out that she does not have a metabolic disorder and the theory is that the trauma she suffered due to the virus was just too great for her body.”
As Grace’s difficulties are all physical, she was referred to the CRC in Clontarf which was to become a vital lifeline for her and her family.
“I don’t think we would have survived as a family without the support we got from the CRC.
“The CRC celebrates its 60th birthday this year and part of my motivation for making this documentary was to tell the story of the fantastic services that they provide for families as well as the story of how we came to accept our daughter for what she is.”
After two years in the CRC playschool, Grace started junior infants there. Her character and confidence were gradually built up until the devoted staff felt she was strong enough to transfer to mainstream.
Her playschool teacher had advised her parents not to move her until “her personality is as big as her wheelchair”.
These days, Grace is a popular little girl with a very full life. She has settled well into mainstream school and is an avid horse-rider and swimmer.
Her mother is worn out bringing her back and forth to birthday parties.
As Grace’s mother so eloquently puts it herself: Welcome to Holland is one family’s personal experience of learning – learning about disability and the quiet art of acceptance and dignity that go along with it. Learning that having a disability is not the end of the world; learning that it is not what we can do but who we are that matters and learning that there is a place in this world for every single person, it’s just a matter of finding it.”
Welcome to Holland will be broadcast on RTÉ Radio 1’s Doc on One on Saturday, May 26th at 6.05pm and will be repeated on Sunday, May 27th. Listeners who miss the programme will also be able to access it through the website rte.ie/radio