The Best and The Worst Conversation
Our little guy Miller completed our family when he arrived in January 2020. He had deep brown eyes and a perfect little haircut, like he’d been to the barber in preparation for his big arrival! His 2 older brothers, couldn’t wait to meet him and initiate him into brotherhood, showering him with kisses and cuddles.
A few weeks later however we learnt that Miller had moderate sensioneural hearing loss and needed hearing aids and speech therapy.
Then 6 months later we learnt he had global development delay (GDD) and hypotonia and needed physiotherapy and occupational therapy.
And within a few years we learnt that Miller also has epilepsy, movement disorder and cortical visual impairment.
During these early years, specialists and therapists would constantly tell us not to panic and that Miller would ‘catch up.’ Eventually through genetic testing we found that Miller has a SPATA5 gene abnormality. At the time he was the only child with the gene in Australia. There was limited information about what his life would look like going forward. We still remained hopeful that Miller would improve, however it wasn’t until we finally saw a Neurologist who sat me down and said, ‘I have to be honest with you, these conditions will be lifelong issues for Miller.’
It was the best and worst conversation.
The worst because no one ever wants to be told their child will have medical conditions that will impact their life, for the rest of their life.
But the best, because now we knew what we were dealing with. We could make a plan, look at our options and start accepting that this is our new reality. And it was hard. I’m a self-confessed control freak and had an amazing life mapped out for us. What jobs we would have. What house we would live in. What schools the kids would go. What holidays we would go on as a family. It’s been challenging to accept that everything I had planned, the life I imagined for our family, will totally change. Now, our biggest priority is to ensure that Miller has the best life possible, and today our biggest goal for him is to live as normal life as his brothers and to ensure he never misses out or feels excluded.
Through a lot of googling and research we joined our local race running community. We connected with a local charity to fund a race runner. We joined every single Facebook group relating to all of his conditions.
We even made an Instagram page to connect with other parents.
Earlier this year, I joined a co-design group with Kindred to help create ‘Count Me In’. It’s an online resource designed to help parents assist and support their children in community activities. Participating in this group made me realise that although our kids have different disabilities and needs, we’re all experiencing the same daily problems, emotions and challenges. And it feels good to find others that just instantly ‘get it.’ It has been these connections to the community and other parents that have made me feel more confident and empowered as a parent. I won’t hesitate to advocate for Miller no matter the circumstances.
Miller is now 4 and is not yet crawling or walking independently. He is non-verbal and uses a PODD book or AAC device to communicate. His epilepsy has become worse and he’s now on several medications, and we also found out he’s allergic to dogs – life can be so cruel! As Miller grows older, he has fallen more behind his peers, the physical challenges are more difficult and living life with epilepsy is full of uncertainty.
There have been some really dark days, but because of the supports we now have in place, Miller is living his best life. He’s participated in race running events. He’s tried indoor sky diving. He’s been to shows and events. He had a go at surfing. And he is constantly smashing his therapy goals.
We know that we have access to a wealth of resources, wonderful communities and other parents out there who we can go to for support when we need it. We know we can face whatever comes our way. We’ve got this!
By Natasha D’Arcy
Natasha is a wife and mother to three young boys from Brisbane, Queensland. Her youngest son Miller was born with a rare genetic condition (SPATA5) and has multiple disabilities. Natasha has had to quickly learn to navigate the complex landscape of therapy and medical appointments and is an advocate for various disability organisations. Since having Miller, she has discovered her love of art and uses it as form of therapy. Natasha is currently studying Visual Arts at TAFE and would like to connect her passion for the arts with her advocacy work in the disability sector in the future.