Our story: life with Olivia

Thanks to Jasmine for answering our questions about life with Olivia.

How did you first become aware that there might be a concern about Olivia’s health or development?

My pregnancy was uneventful despite my daughter, Olivia, being born 5 weeks early. We were in ICU for a week and given a clean bill of health and sent home!

A week later, however, she went into cardiac arrest at my mother-in-law’s house, and I had to perform CPR on her. We were taken to Princess Margaret hospital and that’s when we found the first of many issues with her health.

Can you tell us a bit about the diagnosis Olivia received? What does it mean, and how does it affect her life?

Olivia has several diagnoses such as a heart condition, lung condition, global developmental delay, she is non-verbal autistic, has a brain abnormality, a genetic condition, plus mild cerebral palsy.

The first diagnosis – the heart condition – is the hardest in my opinion, as it has opened my eyes to a world of medical appointments and advocating for my child in a way I never imagined.

The genetic condition affected our family as it’s hereditary and I was pregnant with our 3rd baby when I found out about it. Her global developmental delay means I am now involved with the NDIS, therapy appointments and the year after year battle of fighting for your child and justifying every piece of medical equipment you need and every dollar you spend.

I found that we have had to grieve the life we wanted for Olivia and accept the life she will have. We had to come to terms with the fact she might not ever say “I love you” or move out of home, but you learn to enjoy the smaller things in life and appreciate the laughter and every little smile.

How has the diagnosis impacted your family dynamics and daily routines? Have there been any specific challenges or adjustments you’ve had to make?

The diagnosis has impacted our family routines massively! We have weekly speech, fortnightly OT and music therapy and physio sessions; along with full-time school and medical appointments! It has made it impossible for me to go back to work.

I have found that the biggest challenge we have is time; trying to find enough time to do the things my daughter needs; plus spend time with my other children, research and plan for NDIS meetings, run a house and of course, try to fit in what little time you have for self-care to feel like a human being.

I found I had to put my life ‘on hold’ for a long time. I have only just now gone back to school and started to take my self-care seriously.

What kinds of treatments, therapies, or interventions has Olivia been receiving?

We’ve undertaken therapies for years, and she has improved, but it’s been at a very slow pace.

Speech therapy has helped get communication devices and helped with implementing signing. It’s also helped with a mealtime management plan and her safety while eating when she’s sick.

OT has helped with Olivia’s daily living skills such as eating, cutlery, safety steps and making things easier for her to use such as electric soap dispensers and easy push button cereal dispensers to help her build up her independence.

I started to feel her development was coming to a bit of a stand- still. That’s when I decided to look at music therapy. It was the best thing we could have done as she found something she really enjoys and was able to stay in an activity for a prolonged period of time.

Olivia started to make eye contact, started to copy actions and started to copy sounds. I couldn’t believe how much difference it made in such a small amount of time!

She can now sign ‘more’, ‘finished’, ‘help’ and ‘open’ with assistance.

As a parent, what are your primary concerns and hopes for Olivia’s future in light of her diagnosis? How can those around you support you and your family?

My main concern and frustration continues to be there isn’t any information out there on my daughter’s genetic condition. There is no-one out there, as far as we know, that has the same condition, so doctors and specialists are unable to tell us what her life will look like and how her development will progress. The other main concern I have is what will happen to my baby after I die. I have to leave her care in the hands of her sister and as much as I know when she grows up she will do it and be happy to, I don’t ever want to place this responsibility on anyone let alone my child.

It’s not even the daily management such as nappies and showering that takes its toll, it’s year after year of NDIS reviews and the stress that comes with advocating for someone who doesn’t have a voice. It is solely on me to advocate for what she needs, to live and thrive, to be the best possible version of themselves.

If someone was wanting to support someone going through a massive change like this it can be as simple as reaching out over messages and asking if they want a chat – sometimes you just need to vent what is going on. Even popping around for a coffee and a chat can help.

A lot of the times you feel so alone and isolated and that no one understands what you’re going through; just having a friend there to be a non- judgemental voice and a safe space to express how we are feeling can make all the difference.

And finally, what’s your greatest hope for Olivia’s future?

My greatest hope for my daughter has always been, and always will be, for her to be happy and know she is loved.