Jordan Ablett has spoken in depth about the heartbreaking medical conditions affecting their first child, Levi, revealing he has never spoken.
Jordan Ablett says doctors have told her and her husband, dual Brownlow medallist Gary Ablett, that while there’s no guarantees, it is now highly likely that he will never talk.
But Jordan says although Levi hasn’t said a single word, “his life has been a constant message”.
“It’s really difficult from a practical point of view but also really difficult just being his mum and not being able to hear his voice or know what he needs. When he gets upset, I have to guess what the problem is,” Jordan says.
“Although I will say, despite him not being able to communicate, I do feel as though I’ve really learnt to understand him over the years – I have had to put a lot of confidence in my parenting.
“It’s also difficult because I’d love to just hear his thoughts, have conversation with my boy and for us to know that he understands how much we love him.”
Three-year-old Levi is also vulnerable to aspirating, whereby food, drink, or stomach contents can make their way into the lungs. They are in regular communication with Melbourne’s Royal Children’s Hospital, where Levi receives ongoing treatment and consultations.
Jordan Ablett is again an ambassador for the RCH Good Friday Appeal, as someone who understands the need and value of receiving the best care and advice.
“We are in what feels like constant communication with the RCH,” Jordan says.
“He’s had a lot appointments the past couple of months but gratefully, these have been via Telehealth and haven’t always required Levi to be physically present.
“He has a wide team who monitor his health. Due to his condition, one of the biggest concerns for Levi is his respiratory health. Low muscle tone and a few other contributing factors (mean) he is far more prone to picking up viruses and unfortunately, doesn’t have the capacity to fight them as well as others his age.
“He also is at high risk of aspirating which can be detrimental to him. Because of this we’ve always had to blitz every bit of food for him, making sure it’s as smooth as possible so that it goes down correctly. Aspirating causes lung damage and increases your risk of pneumonia.
“It has been (difficult). Levi’s a magnet to any infections within close proximity to him. Because of this we just need to be extra vigilant.”
Jordan says despite their son’s illness, she lives for the moment: a smile, a laugh, a glimmer of hope can all brighten the day and offer hope of improvement.
She and husband Gary have shared their inspiring and heartbreaking journey since Levi was diagnosed with a rare degenerative disease in 2020. It was news that would rattle any parents but they have not only bravely adapted to their new world, they have also shared it publicly as they support and uplift others.
Giving an insight into life with a three year-old and a newborn, Jordan has gained a new perspective. For others who are in a similar situation, she says it is an all-encompassing diagnosis.
“It will be the hardest thing to hear,” Jordan says. “It will completely change you and you will no longer be able to live how you used to.
“As hard as it is, your child will unlock things inside you, things that matter and that are of value. They will help you see the world with different lenses. You’ll learn to see others before yourself … You won’t live like you used to, but you won’t want to either.”
Jordan stresses that her way of living has changed because “he’s changed me”.
It’s not an inconvenience to have a child with a disability and a shorter life expectancy; it’s a love that is palpable in every sense.
For the Abletts a different dimension, but a welcome one, has been the addition of a second baby.
Jordan and Gary announced the arrival of their “angel” daughter Grace in November. The pregnancy was kept a secret until birth and has been a joy for the family and also Levi, who has relished having a little sister at home.
“Levi’s doing really well at the moment,” Jordan says.
“I guess it’s hard to measure where exactly he’s at. We haven’t necessarily seen a great deal of improvement, but we also haven’t seen regression either, so that’s a win as far as we’re concerned. He’s loving being a big brother and having a constant companion around.
“Time is flying and we can’t recall life without her. She has slotted into this family perfectly, her sparkly smile and personality are really starting to shine through.
“It’s beautiful seeing Levi with his little sidekick.
“I don’t think my perspective has changed necessarily. It’s mostly just trying to navigate the juggle of having a three year old with a disability and a baby who are both heavily dependent in their own right.
“Although it’s been the best thing being able to welcome a new family member, it’s been really challenging also. It also already feels like a completely different parenting experience than when I became a mum for the first time.”
Jordan says you need a village of love and support to make things work but she wouldn’t have it any other way.
As another way of sharing and giving back, last year she unveiled a new forum to help parents with special needs children.
Called the House of Hope, she says it’s a place for all to connect and relate with the daily challenges.
She hopes people dig deep for the Good Friday Appeal.
“Before learning of my son’s diagnosis, I never anticipated that I would become so familiar with the RCH,’’ she says.
“Levi requires a great deal of care that ultimately stems from the hospital, so we’re always grateful to everyone involved there and how they go about helping the children.
“For the hospital to continue to provide its patients and families with world-class care (it) relies heavily on the generosity of the community. I have no doubt that we will rise to the occasion, as we do every year.
“As an ambassador for the Good Friday Appeal, I’m ready and available for where the need is.”
Give to help kids like Levi
Originally published in the VWeekend Magazine in the Saturday Herald Sun, 9 March, 2022
Words: Jackie Epstein