‘I would do anything to have her back for a day – just to get the chance to hold her again’
When Siobhan Powell was born, her parents were told that she had a rare chromosome disorder and would most likely pass away within a year. The family had 36 years together — filled with love and the relentless fight for better supports for their child. Mum Johanne Powell tells Kathy Donaghy their story
If a picture is worth a thousand words, Johanne Powell knows that in this case, the words are all about love. The photograph captures her and daughter Siobhan, who passed away earlier this year, snuggled in close while the family dog Robbie gazes at the camera. It was taken only a year ago when Siobhan was safe and well in her mother’s arms with what Johanne calls her ‘cheeky grin’ on her face.
In August of this year, at the age of 36, Siobhan, who was born with an extremely rare chromosome disorder, passed away at home.
The photograph of mother and daughter is part of an exhibition at IMMA called ‘Every Picture Tells a Story’, which features photographs of 10 family carers with the people that they care for and family members.
At her home in Fethard-on-Sea, Co Wexford, Johanne (67), originally from Norway, is still amazed by how much she was affected by seeing the photograph. “I had seen the picture, but when I turned around and saw it blown up, it felt like someone had stabbed me in the heart. It brought back so many memories,” she says.
One of the things Johanne loves about the photos in the exhibition is that they’re so full of joy and life and love. “They’re not depressing. They don’t show any of us as downtrodden or suffering people. We are strong and we are capable. We are not to be pitied — we should be a resource because we have shown our resilience to get to where we are,” she says.
Johanne does not want to be seen as different or special as a mother because she cared for a child with profound needs. “I hope people will look at it and see that we are the same as you. We’re not special people — that makes me angry”.
Johanne has always been fighting for her daughter. The fight started almost as soon as Siobhan was born in February 1984. Johanne and Alan, now 70, were excited to be starting their family. They had bought a house in Fethard-on-Sea and were looking forward to their new arrival.
Johanne’s pregnancy was straightforward. It was only when their daughter was whisked away after birth that the couple knew there was something wrong. It would be months before they could take her home with them.
The Powells would learn that Johanne’s condition was so rare that there were no other known cases like hers in the world. Johanne clearly remembers calling her mother back in Norway to tell her she’d had a daughter. She doesn’t remember the next month. It was as if she was going on automatic pilot.
The doctors told the Powells that it wasn’t likely that Siobhan would live beyond a year. Johanne says while they were devastated, they simply got up every morning and put one foot in front of the other.
Despite the doctors’ warnings, Siobhan defied their predictions. And while her needs were complex – Siobhan had a physical and an intellectual disability and didn’t speak — her mother became an expert in reading her daughter’s body language.
With her husband away with his job at sea for long periods at a time, often it was just Johanne and Siobhan at home. “She would work at getting through to me what she wanted. She wouldn’t settle until she got what she wanted,” says Johanne.
One of her favourite things in life was to settle on the couch with her mother and touch the crispy pages of magazines and books. She loved attention from others and going for Sunday drives with her father.
“We would have liked more children. We didn’t have any, it was just her. That affected our lives in a big way — in a good way — I was able to fight more for her. It gave me time and I have always fought for her,” says Johanne.
When it came to going to school, that’s when Johanne feels her battle for better services for Siobhan really began. Living out in the country, 24 miles from Wexford town, where the nearest services for Siobhan were, meant an uphill battle for transport.
In the early 1980s, a group of mothers had organised the lease of a small unit in Wexford and this was the first place Johanne went outside of the home, for a few hours, three days a week. But it wasn’t suitable or big enough for the children’s needs and Johanne was among the mothers fighting for better facilities and for transport to and from Wexford town for them.
“When she turned five, she would’ve been entitled to an education but the Government at the time decided you couldn’t educate children like my daughter. If I sound bitter, it’s because I am. My main problem has always been transport. We managed to raise funds and buy a second-hand bus to go to St Clare’s day centre in town. Later on they decided to give us education and transport — Siobhan was 14,” says Johanne.
She feels very strongly that had her daughter had access to regular speech therapy, physiotherapy and education and she and her
‘There was no support to make my daughter the best she could be. I think she could have done more and been more. She could’ve had a fuller life’
‘We would have liked more children. We didn’t have any, it was just her. That affected our lives in a big way — in a good way — I was able to fight more for her. It gave me time and I have always fought for her’
husband had had more respite, life might have been very different for all of them. The quality of Siobhan’s life would have been better too, according to her mother.
“It was such a nightmare — all the fighting. Every summer, come June, we’d get a letter saying transport wouldn’t be continued and we’d run around like headless chickens to get it sorted,” she says.
Even in 2016, when Siobhan was 32 yearsold, they were still being forced to fight for transportation for their daughter to her day centre provision.
For the last 15 years of her life, Siobhan’s parents knew that she was getting more tired. Her kidneys were giving up but Johanne says she and Alan were determined to find a place for her long-term should Siobhan outlive them. They ran into hurdles with trying to make any kind of plans.
This is something that Siobhan feels is a big stress for families and something that Government agencies must work harder to co-ordinate. “The HSE keeps telling us all ‘we’ll look after them’ but they’ll put them into old people’s homes. They should be planning. The Government would sit down and make policies about how they are going to look after our children. When they leave school, until they hit old age, they will get whatever someone thinks is suitable for them. It can’t be that difficult,” says Johanne.
She says Siobhan craved the company of people of her own age and ability. “When you were 25, did you want to be at home with your parents?” she asks.
Her mother says some people have this notion that individuals with an intellectual disability are all the same. “They are all individual. They have their own wants and likes. People would say ‘I bet she loves music’. I would say ‘no, she’s exactly like me, tone deaf ’. They’re not always contented, loving children.
The Government goes around thinking they’re sick and they only want peace and quiet. They are not sick — they have a disability. Siobhan had kidney failure; that was a sickness. Her disability was not a sickness”.
When it comes to talking about Siobhan’s death, Johanne is quieter. The grief is still very raw but she wants to talk despite it to raise awareness about the daily battle carers have to fight.
“It was such a relief she didn’t suffer at the end. Even to this day I’m not sorry for her. It was her time to go but I’m devastated for me and her father. I miss her terribly. I would do anything to have her back for a day just to get the chance to hold her again. I know I can’t and that’s the way it is,” says Johanne.
“Someone asked me once how, do you manage? I said, I don’t know how not to manage. One of the things I find most difficult now is to find something to build my day around”.
Johanne believes that things could have been very different. With more support, Siobhan could have thrived more. She herself might have pursued other things. She says the last time she worked outside the home she was 29 years old.
Her life was caring for her daughter 24/7 and now she feels she’s flailing around “looking for something that’s me”.
“There was no support to make my daughter the best she could be. I think she could have done more and been more. She could’ve had a fuller life,” her mother says. Family Carers Ireland is calling on businesses and entrepreneurs across Ireland to sponsor one of the compelling images in the exhibition for €5,000, with all of the money raised going into a National Hardship Fund for family carers most affected by the
Covid-19 pandemic. For more, see familycarers.ie