'Life, or something like it': One mum's honest account of parenting a profoundly disabled child

Jasper Lyon was born with a complex combination of rare genetic syndromes.
Jasper Lyon was born with a complex combination of rare genetic syndromes. Photo: Supplied

What happens when your child is born so profoundly disabled that you know, from the outset, the total return on your parenting investment will be an attempted provision of quality of life? Welcome to life - or something like it. 

Jasper was born in March 2019. He is now, two years later, classified as being one of the most medically complex and least 'compatible with life' children in Australia.

Jasper lives with Costello Syndrome and a secondary diagnosis of SCN1A Epilepsy (Dravet Syndrome). He is one of the most severely affected children in the recent  history of both of these syndromes - and is the only recorded case of a child having both syndromes. 

Jasper loves his big sister.
Jasper loves his big sister. Photo: Supplied

There are many things that come together to make Jasper so complex.

From holding his breath and requiring oxygen to be pushed in through his tracheostomy to open his airway and stop him from dying, to seizures that send him into the depths of neurological hell until enough medication is pumped into his little body that they finally stop.

In addition to this, he cannot communicate his needs in any meaningful way apart from crying (which he does with robust efficiency). He cannot smile. He cannot hold his head up for more than a few seconds at a time. He cannot use his hands to grip.

The medication he takes to control his epilepsy stops him from moving and developing. He does not meet milestones.

Hospital is our family's second home

Jasper Lyons has spent much of his young life in hospital.

Jasper at hospital when four-months-old. Photo: Max Mason-Hubers

Jasper spends months in hospital at a time.
 
We had more than 15 ambulance trips between November 2020 to February 2021, and spent 46 days in the Paediatric Intensive Care Unit at John Hunter Hospital, Newcastle.

We have spent a third of his life in the Intensive Care and Emergency departments.

Advertisement

During the months we live with Jasper at the hospital we continue our work lives (both working full time), and parenting our seven-year-old daughter, Darling. 

Jasper with mum.

Jasper with mum Sas. Photo: Supplied

 
My husband, Matt, and I are a tight team.

We have each other's backs. We are fiercely protective of both our children and take turns leading the way as the other falls to their knees while navigating this new life of ours, where world-shattering news is always only moments away. It's really, really hard. 

We have learned to co-parent with the NSW hospital system. Learning how to say 'no' when we need to, and 'yes' through gritted teeth when we know we have to. We need these people in our corner to help keep our child alive. 

'We are a tight team' Photos: Supplied

'We are a tight team' Photos: Supplied

The John Hunter Children's Hospital (more specifically the staff of the Paediatric Intensive Care Unit) love our child - and by 'love', I mean it in every sense of the word.

We are grateful for that love every day. Just as we are grateful for the support and love of our friends and family.

Life, as we knew it, became unrecognisable

In our previous life we were modern nomads - working and moving all the time on a whim. Flinging Darling over our shoulder as we set off on a new adventure. Now we have to be within 15 minutes of a hospital so Jasper can live at home with us.

Our house is set up like a hospital Intensive Care Unit. We live surrounded by medical equipment and life-saving drugs that need to be administered within one-to-three minutes or someone will die. 

Jasper Lyons

Jasper's big sister Darling showers him with love. Photos: Supplied 

Our daughter takes all of this in her stride because she believes that her brother is what all little brothers are - a pest who takes up too much of her parents time and sends them round the twist and back again. As parents, we take joy in watching our children love each other.

There is also joy, and tears

We take pride in the tiny things with our son. We cry with joy when we find a stuffed toy that motivates him to run his tiny, beautiful fingers through the fur. We celebrate him every time he holds his head up. We wait for a smile that may never come. 

As we go through our first National Disability Insurance Scheme (NDIS) plan review, which is when you 'pitch' to the government just how disabled your child is in order to get funding, we are confronted by the medical reports that are a requirement of the process.

We read that he is 'profoundly disabled', that he 'meets no milestones', that he is 'one of the most complicated' cases. We read it, and we weep.

Jasper's grandfather Guy Rowlands support is unwavering. Photo: Supplied

Jasper's grandfather Guy Rowlands' support is unwavering, and so valued. Photo: Supplied

We cry quietly into our dinners and hide it from our children. We check on each other in the tiny moments we have when we are just the two of us again. 

We know that everything written in the reports is real and we always say to each other that 'we just keep it real' - but it still puts into words just how poor the outcomes are looking for our son. 

Without the NDIS we would be living in a hospital, probably depressed, and possibly divorced. Separated from each other at the time when you need each other the most. The NDIS means we can live at home. The NDIS means we can stay a family.

Jasper did not qualify for the regular agency nursing services because his needs are too complex, so we have a group of Paediatric Intensive Care Unit nurses who tag shifts onto the end of their hospital roster.

Jasper Photo: Supplied

'Jasper has taught us so much' Photo: Supplied

These magnificent nightingales let us sleep for a few nights a week without the worry that we might have drifted off at the wrong time and wake up to our son having succumbed to one of his symptoms. These nurses are our lifeline and the NDIS pays for them. 

We have found the NDIS to be an incredibly nimble service without which our family would not exist. We are so grateful to live in Australia. 

There is no doubt our son has enriched our lives

Like the worst parts of our new life, the most exceptional wins also centre around Jasper.

Jasper is the strongest, most beautiful human being I have ever had the pleasure to know.

He lives such an undignified life, entirely dependent on everyone around him to meet even the most basic of needs.

Watching TV with his sister

Family time with sister Darling. Photo: Supplied

Yet there he is, resplendent in his Bluey onesie, popping balloons with his eyes on his retina-activated 'EyeGaze' computer. A computer that will, if he stays alive long enough, allow him to surf the net with his eyes, order food, turn on and off smart lights, and speak to us. 

There he also is, holding his sister's hand and staring at her intently as she cuddles him and whispers about her world.

Jasper is magnificent.

He has taught us what 'quality of life' really means

I understand now that 'quality of life' means 'to live a life to the best quality you can possibly have'. If you had asked me two years ago what those words meant I would have said something like: 'to achieve a meaningful impact on the world around you'. 

My life growing up and everything my parents afforded me meant that I had no understanding of what it means to accept that each life is precious because of, not in spite of, our adversity. 

Without Jasper I would not have built a company with my friend Todd McKenney, toddcreates.com.au, a platform from which I can assist those with disabilities and their carers' to create incomes for themselves from their own homes.

Jasper enjoying some fresh air Photo: Supplied

Jasper enjoying some fresh air. Photo: Supplied

I would not have dreamed so big or imagined that I could achieve that sort of result before I knew Jasper. If he can thrive, so can I. 

As we move through what is to come, which is defined by all concerned as 'we have no idea what is to come', we continue living and loving and trying to build a life and striving to be good parents and people. Much like everyone else. 

We are taught to approach parenting with the goal of raising our children up to meet the world. The opposite is true of our job as Jasper's parents and advocates - we must raise the world up to meet him. 

There is no shame

I'm not ashamed that my child is disabled.

I'm ashamed that I didn't know that the parents of children with disabilities are warriors - to know them is to love them and want them in your corner. I've never met a group who are so selflessly motivated to watch their friends succeed. 

Jasper with his family when he was four-months-old.

Jasper with his family when he was four-months-old. Photo: Max Mason-Hubers

Disability needs to be spoken about.

I need you to know that my child is profoundly disabled and that he deserves the right to live. I am going to politely, and with respect to those around me, raise the world up to meet him. He is rare - and like most rare things, he is complex and fragile. 

Jasper Lyon was born, he lives life (or something like it), and while he continues to do so, his place in the world will be carved out by a proud and passionate mum, a dad the size of a linebacker with the heart of a king, and a sister who never stops smiling at him even though he can't smile back.