Niki Lakerink has a brain aneurysm. It’s affecting her memory and her thought processes, and there’s a chance of it rupturing and killing her. She needs surgery within a matter of weeks.
But there’s one thing that’s causing the Geelong single mum more stress than anything else right now. She has no one to help her take care of her nine-year-old daughter during the months of recovery after the operation.
Lakerink’s daughter is on the autism spectrum and has ADHD.
“She goes to mainstream school but she has mega-meltdowns every day,” Lakerink tells Mamamia. “She’s got significant behavioural issues. She’s got the comprehension of a four-year-old when she’s nine. I have to put my arm in front of her when she crosses the road, still.
“She has a sleep disorder. She sleeps in two-hour cycles, meaning she wakes up in the night multiple times and can’t self-soothe and ends up in anxiety and meltdowns, so she sleeps with me so I can soothe her and get her back to sleep.”
She says it’s taken her years to figure out her daughter’s differences.
“I’ve got the benefit of being on the spectrum myself so I can see where some of it comes from.”
Lakerink, an artist and designer, has been living with the aneurysm for almost four years.
“I woke up like I’d had a stroke,” she remembers. “My face was paralysed and I was having tremors and seizures. I was in tremendous pain. I went to the ER and they sent me home saying it was migraines.”
Lakerink also has multiple sclerosis, and the aneurysm was eventually found when she had an MRI to check if she had any new lesions on her brain. She’s been told she needs to have surgery to clip the aneurysm, to reduce the risk of it rupturing.
“I really worry if I have a seizure it might rupture, and if ruptures, I think 33 per cent of people die,” she says. “A lot of people who do survive have brain injury.”
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On a daily basis, she’s suffering headaches, fatigue, dizziness and memory loss.
“It is terrifying,” she says. “You value your brain. You think, ‘I used to be this intelligent person and now I repeat myself and I forget how I get places.’
“I’ve started losing blocks of memory, like I lost 10 minutes of time the other day. I can’t remember any of it.”
She says her daughter can’t understand why she’s so tired and forgetful and can’t walk properly.
“Sometimes she says some pretty mean things about me being stupid and useless. It’s frustrating for her.”
Lakerink was meant to have the brain surgery last year, but due to her mother’s death, she put it off. Now she’s due to have it sometime this month.
“You think about them drilling into your brain,” she says. “The surgeon is amazing – he’s got a really great reputation – but I’m terrified. I’ve had to write an after-care plan and make sure my will and everything is sorted.”
Lakerink doesn’t have any close family support, and because so much of her focus has been on her daughter, she’s become socially isolated. She’s got one friend who can look after her daughter while she’s in hospital.
“That’s about all I’ve got organised,” she adds. “And a month’s worth of meals in the freezer.”
The recovery process will take months. Lakerink will be restricted to lifting only very light weights, and will also lose her driver’s licence, possibly permanently. Her main concern is getting her daughter to school every day and back home again.
After dozens of phone calls to government agencies, Lakerink says she has been offered 10 hours of in-home respite – enough to cover picking her daughter up from school for one week. She says the other option offered to her was foster care.
“Having just lost my mum, the last thing my daughter needs is foster care,” she says. “For her, that would be me giving up on her. I think it would just send her backwards and she’d be so angry with me. I couldn’t do it to her.
“And I don’t want to have to recover without my child here. It wouldn’t feel right.”
Mamamia contacted the Victorian Department of Health and Human Services.
“There are a number of community organisations that provide respite care for parents of children with disabilities,” a spokesperson says.
“The NDIS is also operating in the Barwon area and able to assist with accessing these services. The Department of Health and Human Services has contacted the NDIA which will work with the client to ensure they provide suitable respite child care assistance.”
Lakerink has turned to GoFundMe for help. She’s hoping to be able to raise enough money to make sure her daughter can stay with her while she’s recovering, and to help her regain her independence after the surgery. She’s hoping for a mobility scooter to allow her to get around, a computer with specialised software so she can work from home, safety rails and other modifications for the house, and supports such as trolleys to help her with lifting.
But with just two weeks to go before the surgery, Lakerink knows she’s running out of time.
“I am realising this could be my last two weeks, or the last two weeks before a long recovery,” she says. “Suddenly the drama and sadness mixed into asking for help seems moot and acceptance of ‘what will be will be’ is all that’s left.”
You can help Niki and her family by donating to their GoFundMe.
Feature photo courtesy Niki Lakerink/GoFundMe
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