A mother's heartache
Imagine hearing your baby son has cerebral palsy. One mother tells Joy Orpen how she found the support she needed to cope with the shock of having a disabled child
When Ann-Marie Reynolds had Luke five years ago, she was ecstatic to have a second healthy son. Just a short while later, her world fell apart when her gorgeous baby was diagnosed with a chronic illness.
"It was a normal pregnancy and the delivery was fine," recalls Ann-Marie. "There were no complications."
So she settled down to enjoy life with Derek Smyth, her partner, and their children Kyle, now 13, and Luke. Seven months after the birth, however, she began to suspect something was wrong.
"Luke started to make jerky movements and his eyes would become fixated. The doctor initially thought the sudden movements were due to a high temperature caused by a chest infection. But Luke got worse and even began jerking in his sleep," she recalls.
Ann-Marie took Luke back to the GP, who listened carefully to what she had to say and then referred the child to Temple Street Hospital. A couple of weeks later an electroencephalogram (EEG) -- which monitors electrical signals in the brain -- was done. This confirmed that the infant had epilepsy.
However, the consultant was also concerned that Luke might have cerebral palsy (CP). So a magnetic resonance imaging (MRI) scan -- which produces sharp, high-definition images of the inside of the brain -- was done, and this confirmed the CP suspicion.
"I kept myself together until I got to my mother's house, and then I broke down and howled," says Ann-Marie.
She says CP occurs when the brain is damaged. However, the actual cause of the brain damage may be difficult to pinpoint. In Luke's case, it would seem he had a stroke while still in the womb and that resulted in brain injury.
It was predicted that he would have problems with speech and would be unable to play certain sports. Unfortunately, later on a different, less benign picture began to emerge.
"As time went on the news got worse, not better," Ann-Marie says. "Usually you hear the worst-case scenario first, and then find out later it's not so bad. But, in my case, it was the other way round. Afterwards I was told he might not walk or talk at all. It was devastating."
Ann-Marie explains that the original, optimistic prognosis was understandable, as there is no way of predicting the impact of CP on any child. "Every case is different," she says. "It's only as time goes on you'll know how they will be affected."
Ann-Marie's way of dealing with her son's diagnosis was to go into denial. "I didn't want to talk about this to anyone," she says. "It was just too difficult. I was so angry. I even cursed God. I couldn't believe what had happened. I had done everything right. I didn't smoke, and I certainly didn't drink while I was pregnant. But then you see drug addicts with perfect kids. I felt cheated," she says.
"I just didn't want this for my baby -- I loved him too much. I didn't want him to be sick and have a disability."
Ann-Marie says the CP diagnosis really shook her, coming as it did so long after his birth. "I had what appeared to be a perfectly healthy baby and then one day, bang, that's gone, and you are put into a totally different world -- one you don't want you or your baby to be in."
And, even though Ann-Marie cannot abide the illness, she does square up to the huge responsibilities it brings. "It's like when someone dies. You don't really accept the loss -- you just learn to live in a different way. You still have your struggles and your bridges to cross," she says. "Every time we need a new piece of equipment for our son, I come back to reality full force."
Currently, though five-year-old Luke can move about with a walking aid, he is learning to use a powerchair.
And, while he has some words, he also uses a communicator folder, which has pictures, so he can point at what he wants. He uses sign language, and he will soon be getting a talking device.
"He can get his point across if you just listen and watch his eyes," says his proud mother. "It's just brilliant he has all these ways of communicating."
While we are talking, Luke is busy nearby at the school run by the Central Remedial Clinic (CRC) in Clontarf, which is for children from three to 18 years who are living with physical disabilities.
The atmosphere in the school is noisy, lively and bright. Children, including blond, angel-faced Luke, are happily zooming about in a variety of wheelchairs, or using walking aids.
The classrooms look different from the norm, too -- they are simply brimming with brightly coloured teaching and communication aids, while one room has lava-style lamps with sparkles and blobs that change colour and move about. This is the sensory room, and it benefits many of the children being schooled here.
Ann-Marie started bringing Luke to the CRC when he was a year old and she will forever be grateful for the support and love she found among the hugely caring staff and among the participants in the Parent and Toddler Group.
"Following the diagnosis I was living in isolation -- it was just too painful to talk about Luke's condition. I was holding everything in, and operating on auto-pilot, until I started coming here.
"There were 10 of us in that group and we would bring our kids on Tuesday mornings. While they played, we would talk about all the things that were bothering us," Ann-Marie recalls. "We had social workers to facilitate the group, and guest speakers sometimes. It was brilliant. It was great to be able to bounce ideas off each other and to know I wasn't the only one going through this."
Ann-Marie says the women often stayed on after the allotted time to chat to each other, and sometimes they would meet up outside the CRC. "I got information, support and friendship from that group. Some of those women have become lifelong friends now Luke has left and started school."
To mark the 10th anniversary of the Parent and Toddler Group, the CRC recently produced a booklet in which Ann-Marie and seven other mums tell their heart-wrenching -- but equally heart-warming -- stories about coping with children who are living with disability.
Geraldine Prunty, principal social worker at the CRC, said: "These parents wanted to write their stories in the hope that they might assist others facing the same struggles. Every story shows their huge love and dedication to their children."
No doubt about that.
The Central Remedial Clinic, tel: (01) 854-2200, or see www.crc.ie
Sunday Indo Life Magazine