WHEN Sinead Neary woke up paralysed in a world that she never imagined; she had two wishes. Her first wish was to get home to her husband Bob and their two little girls.
“On the July 26, I said goodbye to Bob, Jessie and Ciara, and I hopped on a bus to go to the hospital for scheduled surgery,” says Sinead, aged 34.
“I expected to be home again the next evening. When I left home, my youngest daughter, Ciara, was nine months old. When I got home she was a toddler and she was walking.”
Sinead spent five months in hospital where she had six weeks of radio-therapy treatment. A mass in her spine turned out to be an aggressive malignant sarcoma. It is extremely rare and there is no other known case in the world.
“The location of the malignancy, the size of a small finger nail, was in a dangerous place, in the middle of the spinal cord,” explains Sinead’s husband, Bob.
After Sinead came home to her beloved family in Gurranabraher, her second wish was to get a wheel-chair accessible car so that the little family could get out and about.
“I asked for the children more than me,” says Sinead who set up a Gofundme page.
“Once I was home from hospital stuck in a room in bed all day, every day; I didn’t mind. Now that I’m home for a while; I want to get out a bit for the kids. I feel guilty for them, that they are missing out. Everyone’s been brilliant. But I want to create some normality for them. Transport is the main thing.” Sinead’s second wish came true when local woman, Deirdre Leahy, from Farranree, donated a car to the family.
“Her Dad had died,” says Bob. “Deidre contacted us, offering us the car.” says Bob. “It was an unbelievable offer. We had never met before. Deirdre’s Dad had suffered a stroke and the family bought the car so that he could go places,” says Bob.
“After he died, they had no more use for it. The car is being serviced by Derry Collins at Ryans Citroen in Bishopstown free of charge. We hope to have it here by the weekend.”
It is a dream come true for the Nearys.
Sinead and Bob had a fairy-tale romance. They met in college.
“We knew each other for five years then we did the travel thing; going to Canada,” says Bob.
“We got a train from Vancouver to New York- because you could only do that once. Right?
“Sinead wants to go back to Canada some day.” Things looked promising and the future looked bright for the young couple. Bob landed a job in Apple and baby was on the way.
“Sinead started getting niggling pains in her shoulder and pins and needles,” says Bob.
“She had a biopsy followed by scans. Sinead had a growth inside her neck. We weren’t unduly worried about the pain. The stitches were heavy ones. Our second baby was on the way, so after more investigation, it was July when Sinead went back for further scans. Another biopsy was scheduled for the end of July.”
It was the beginning of a night-mare journey.
“I remember I had to bring Ciara to our GP because she had a bad cough,” says Bob.
“My mangers at work were really accommodating and I got time off work when I really needed it.
“Our friend, Hazel, who helps us out, came with me and Ciara to the doctor. Meanwhile my wife had woken up from surgery and she couldn’t call for help.”
Time stood still.
“It seemed like an eternity trying to cry out for help,” says Sinead.
“I could barely breathe. When I was in the recovery ward, the numbness started, beginning in my toes; travelling right up to my neck. I woke up in ITU, intensive care, with a tube down my throat, completely paralysed, unable to talk. I spent five weeks in ITU recovering from tracheotomy and being weaned off the breathing machine. I didn’t mind the tracheotomy,” says Sinead. “It was actually ok because now I could talk.”
It must have been a very frightening experience?
“Doubt set in whether I’d ever move again,” says Sinead. “Then, I felt a twitch in my right hand and all hope was not lost.”
The paralysis wasn’t the hardest part.
“No, the injury wasn’t the hardest part,” says Sinead. “I left Ciara at nine months. Now she was a toddler. I was afraid that she’d forget about me. She was so young. I couldn’t hold her.
“Ciara was terrified of all the tubes and wires. Jessica is the most amazing four-year-old. She has sat at my bedside since the beginning. My family and friends really helped me.”
Jessica is her mother’s mini-nurse.
“Yes, she is,” says Sinead with smile. “She knows words like catheter, suctions and physiotherapists. She knows other medical terms that no four year old should know. When the carers come, she helps them by getting out the disposable gloves for them.” Sinead says the amount of support and kindness she has been shown is overwhelming.
“There is so much love and support around me. I never knew that there was so much kindness in the world.
“Our neighbour, Rita, said we could chop down the fence and use her ramp to make it easier to get into our house with the wheelchair.
"Hazel and her husband, Noel, are wonderful,” says Sinead. “Hazel gets two buses to come here. The nurses in the hospital are fantastic. They are so kind. I couldn’t say enough about them.”
Sinead met lots of people in hospital. While Sinead lay there, people came and they went. And they died.
“People asked me; when are you going home?” says Sinead. “Then they stopped asking. I saw patients coming into hospital and going home again. I heard somebody getting the last rites behind the privacy of a curtain. That was sad.” It was sad when Sinead cried so much.
“I think I cried because I was home and back in my own environment,” says Sinead.
“I cried more than I thought I would. I let it out. Sometimes you have to have bad days.”
Bob’s days are routine. They start early, at 6.30am.
“I get the kids up and give them breakfast,” says Bob.
“Jessie gets ready for playschool. I give Sinead her medicine and make sure that she is comfortable.
The usual chores have to be done. The carers; usually two carers, come in three times a day. They are our friends. Hazel pops in to see how we all doing. She checks up on me too!”
Sinead sleeps in a hospital bed near the window in the living room.
During the day she’s out in the wheelchair. Bob sleeps on the couch.
He is a dream husband.
“Bob is brilliant,” says Sinead. “Sometimes it is harder to handle for the people around me than it is for me. He is a full-time Dad and he has to do all the emotional stuff too.”
Bob is the chief cook and bottle washer.
What does he wish for?
“I wish for more sleep!” says Bob. “I’d like to get more than five hours sleep. I’m not into going to the pub or big into sports. We have a great bunch of pals around us. You do what you have to do. Sinead is good at giving orders! You just get on with it for the kids.”
The couple did a rare, spontaneous, thing recently.
“We always have to get a taxi to go shopping or go to hospital appointments,” says Bob.
“Everything is planned. We have to order the taxi the night before. Liam is our main taxi man. When we got to Mahon Point we did a double take when we saw that the latest Harry Potter film was showing; Fantastic Beasts and where to Find them. Sinead is a Harry Potter fan. I got her Harry Potter pyjamas. We went to see the film on the spur of the moment.
We still remember that.”
Sinead remembers what life was like before she was paralysed.
“I used to like hill-walking,” she says. “I like the outdoors. Jessie likes gardening. So maybe when we adapt the house, we can put in a door leading from the kitchen out to the garden and plant flowers. That would be nice.”
Does Sinead believe that she will walk again?
“I know my own body,” says Sinead. “I was a positive person before this happened and when someone says; I probably won’t walk again, I want to prove them wrong. I’m stubborn like that. If I didn’t have children, things might be different. I might just say; leave me alone. But I do have kids.”
Sinead feels that she is getting stronger by the day.
“It is very early days yet,” she says. “I am getting stronger since I came home. My right arm is much stronger. Hopefully the radiotherapy is doing its thing. We’ll have to await the results of the scans. Whatever happens after 18 months; that will be it. There are no answers yet. It is a slow process. My spinal cord wasn’t severed. It was described as being like electric wires that are frayed. The hope is they will fuse back together.
“Thank God for technology,” says Sinead. “I use a stylus pen for the phone and the Ipad. If I got my fingers back and the strength in my arms; that would be enough for me.”
Her nails are spectacular. Sinead laughs.
“Bob and Jessica did my nails. Maybe he’ll learn to do my make-up too!”
We laugh at Bob’s horrified reaction. That’s not going to happen.
But the trips to the sea-side and to Monkey Maze will definitely happen now.
“The car is hugely important,” says Sinead. “Jessie goes out with others, with her Granny and Granddad, but she wants me to come too.
“We can do all the normal things like going shopping and trips to the park and the cinema. Put the kids in the back and there’s room for a pal too,” says Sinead.
“When I started the Gofundmepage; our aim was to raise maybe €5,000," says Sinead.
But the page had soared to more than €17,000.
"We can adapt the house and organise access to the bathroom and perhaps a wet-room and get our sitting room back to normal.”
“It would be nice to do normal. And it would be nice for me and Sinead to have our own bedroom.”
Then Bob can sleep in a proper bed and get a sound nights’ sleep.
Because wishes really do come true. Right?
To donate to Sinead see:https//www.gofundme.com/teamsinead