Mothering a child with a terminal illness

With the same unconditional love, and more, that you would give a healthy one.

But for Mrs Sandra Fairclough, the pain of mothering her sick daughter is so intense she sometimes wishes her daughter had cancer instead of her current illness.

"There's nothing good about having cancer," says the 50-year-old, whose heart goes out to Ms Cynthia Lim, mother of six-year-old Charmaine.

Yesterday, The New Paper reported on how Charmaine lost her two-year fight against cancer, which studded her with tumours and filled her mouth with blood.

"It's very tiring for any mother in that position. It's physically, mentally and emotionally draining. But at least the doctors can immediately tell you the good, the bad and the ugly," says Mrs Fairclough.

"They can give you timelines, how much time you have with your child."

But that's not the case with 13-year-old Chelsea, who suffers from brainstem hemangioma-inoperable - there are lesions in her brainstem, the most compact and important part of the brain, which bleed.

For Chelsea, multiple bleeds have left her paralysed neck down since she was nine years old.

Ticking clock

Ticking clock

Other patients suffer from vision problems, loss of facial functions, loss of consciousness and other cognitive and physical deficits.

It is a terminal illness, and in Chelsea's case, she could die anytime.

Mrs Fairclough, a Briton who has lived here for the past 17 years, describes the illness to The New Paper on Sunday: "Your nerves in your brainstem are like 1,000 strands of spaghetti, each one carrying a signal to a certain part of the body.

"Too much water causes the spaghetti to break. In the same way, with more and more bleeds or breaks, Chelsea loses more and more functions in her body.

"One day, there might be so much damage that she can't recover and she dies."

When will this day come?

"That's the thing, you don't know. If you don't know, it's more terrifying," she says.

But she's far from fatalistic about it.

She's focused on letting Chelsea live her life to the fullest.

"I have to drive her to rebellion"

Chelsea likes reading, painting, and beat boxing. And like many other teenagers, she's into Facebook, thinks of doing "rebellious things" like getting a tattoo, and loves watching the Vampire Diaries.

But there're some differences.

Because Chelsea is paralysed from neck down, she needs people to turn book pages for her and paints with the wheels of her wheelchair.

Mrs Fairclough logs onto Chelsea's Facebook page on her behalf, and if Chelsea decides to get a tattoo, she will have to convince her mother to drive her to the parlour.

She says, with a laugh: "I literally have to drive her to rebellion. And unlike other mums of teenagers, I don't have to worry about what my child is doing online since I have full access."

Judging from Mrs Fairclough's energy, positiveness and wit, one can hardly tell how challenging the past 13 years have been for her and her family.

She runs a training and consulting company and is married to a computer consultant. They have two other children, aged 10 and 15, who are healthy.

Chelsea was born normal, but within the first six months of her life, she had undergone three surgeries.

By the time she celebrated her first birthday, she had spent 110 days in an intensive care unit at the KK Women's and Children's Hospital.

Fighting against the odds

Fighting against the odds

Between her first and third birthdays, she had been hospitalised more than 10 times as the brainstem lesions affected various organs including her lungs and stomach.

She weighed just 8kg when she was three years old.

Looking at their child, who at that time tired easily and walked with a limp, Mrs Fairclough and her husband made a decision.

"You either hold your breath and hold your child real tight, or you let her experience all that she can in life. It was a real leap of faith for us," says Mrs Fairclough, adding that she's glad that Chelsea's condition stabilised enough when she was between three and eight years old, allowing her to swim, swing on a trapeze, do ballet and ride a horse.

"That was a wonderful period in Chelsea's life, and it brought me great joy to let her enjoy her life. She got to be herself."

But Chelsea started to get weaker and tired easily from the time she was nine years old. That year, she became paralysed but her family assumed the loss of function would come back.

"It always had," says Mrs Fairclough.

However, Chelsea did not get better. Soon after, her breathing had to be assisted. A tracheostomy - an operative procedure that creates a surgical airway in the cervical trachea - was needed.

Mrs Fairclough resisted this initially, as there was a possibility that Chelsea would lose her ability to speak.

"How was I to communicate with her then?" she asks.

Mother and daughter worked out a way of communicating using eye signals.

Whisper of courage

Whisper of courage

Just before theoperation, the nurse asked Mrs Fairclough: "Have you recorded Chelsea's voice? You must."

"So I recorded this crazy conversation for all of us to always remember what she sounds like," she recalls.

The operation was a success, although it resulted in her voice being reduced to a mere whisper.

"My whisper has courage because it's all I've got. It's my only way to speak. The courage comes out through my whispers," says Chelsea, who enjoys expressing herself through her blog (theworldtochelsea.blogspot.com) and her art.

Says Mrs Fairclough: "What she has achieved is phenomenal. As a parent, you spend a huge amount of time asking, 'Why me?' But that's a very unproductive position to be in.

"Chelsea is suffering, not me. My job is to help her. At some point, I'll suffer enormously if she dies. But until that day, I haven't lost anything."

She believes that the experience of having a disabled child has humbled her and made her a better person.

"People say, 'I don't know how you do it.' It's true, you don't. Until you have to step up, you've no idea what you can do and how much strength you have," she says.

Remaining positive

Remaining positive

"Everyone wants a perfect, easy life. But I won't trade this for anything. The reality is that my children have created my life, and they are amazing."

Chelsea quips: "I don't want to be boring and normal. I want to be awesome and different."

The road ahead remains rough for mother and daughter. But Chelsea is positive.

"Yes, I get frustrated. But there's no use getting frustrated. I don't know what I want to be, but I just know I have to always move forward and move on," she says.

It's the same with Mrs Fairclough, who celebrates every little triumph in Chelsea's life. On good days, Chelsea can move the index finger of her right hand.

So instead of exchanging fist pumps, mother and daughter exchange finger pumps instead.

Referring to the friendly alien's magical healing finger, Chelsea says as she leans her finger to touch her mother's: "ET phone home."

brynasim@sph.com.sg

This article was first published in The New Paper.