International Women’s Day celebrates women and mothers who care for family members and friends who have a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged.
Katie Stokes, Team Leader in the Trade Marks and Designs Group, shares her story as a mother and a carer to her daughter Bella. Katie’s story touches on the highs and lows of being a mother and carer to a child with Cerebral Palsy, how IP Australia has supported her work life balance, and advice to other mothers and carers.
My daughter Bella was born in 2004 and when she was seven months old, after some concerns around her not meeting her movement milestones, she was diagnosed with cerebral palsy.
This was tough to hear. No one can tell you at that stage exactly what this will look like as cerebral palsy covers a wide range of physical effects and conditions, and every person’s experience and journey are different. I was confronted with an uncertain prognosis and an unpredictable future, and I guess this is why I really maintained a focus on the now. Trying to think too much into the future can be completely overwhelming.
Bella’s cerebral palsy has only affected her physically. She is cognitive and intelligent and has no additional medical conditions. Bella is completely dependent on assistance for mobility and all selfcare. Despite these challenges, Bella has grown into an amazing young woman, who turns eighteen this year.
Bella has taught me a lot about life, about resilience, about ability, about strength and hard work, about taking life for everything you can because you don’t get a second go, no matter how difficult this first one can get. And it can all change in the blink of an eye.
Throughout her life, Bella’s has had some pretty big highs: winning a national cheerleading competition with her partner in a duo; travelling around Australia and New Zealand and overseas; and being an incredible artist. We have always tried to ensure that she experiences as much out of life as possible, and I have always tried to ensure her disability isn’t a limitation.
But with the highs come some pretty big challenges, including eight major surgeries, all of which have significant impacts and rehabilitation. We have seen more doctors, orthopaedic surgeons, physios, occupational therapists, speech therapists, and equipment specialists than I could ever count; and have spent more time in and at hospitals than anyone should.
However, in all of this I am so incredibly grateful to have this incredible young woman, who has shaped me into the resilient, empathetic, emotionally intelligent human I am today. I am blessed to have live in a country where opportunity was readily available to us, that we live in a place with free health care and supportive and inclusive education. So blessed to have the incredible family and friends we do, and blessed that I get to be a mum, regardless of how hard or different it is sometimes.
The one thing I wish people understood about what it’s like to be a carer?
You can do it.
You have it in you, even in the moments you are convinced you don’t.
People often say ‘gosh, I don’t know how you do it, you must be strong!’ The truth is: you just do it, you find it in you, you learn, you reprioritise, and you work out what you both really need. It’s fuelled by love and determination and failure and fear and guilt and pride and strength and love and then just when you think you’re running out, boom, more love. And there is never a moment it’s not worth it. Never.
I’m proud that I can help Bella in the world, help the world see how amazing she is, and help the world shift to focus on ability.
My advice to other mothers and carers?
Give yourself a break. Fold the washing later. You are enough, and you are doing great.
Lean on people! Sometimes you will feel this has to be all you, but it doesn’t. Take your strength from the people around you: people want to help you, people want to support you, let them.
Also make time for fun and be there in the moments that matter. You won’t regret not having a spotless house all the time, but you might regret what you missed out on for that.
Don’t compare yourself to others, and by the same token don’t judge. You never really know what another person’s reality looks like, so be kind, to yourself and to everyone around you.
Be grateful, but it’s also okay to really let go and have a vent! It's okay to say this is totally sucky and unfair. IT’S OKAY!
What has IP Australia done to support me and my family?
I say this and it sounds corny but I honestly think back on everything that has happened over the last twelve years: over everything with Bella, having a son, experiencing close personal tragedy, and the most recent apocalyptic events of the past two years. I can honestly say I don’t know how I would have coped working anywhere else.
The flexibility of working from home has allowed me to continue to work full time whilst managing my carer and general parenting responsibilities. But more than that - the managers I’ve had, the people that have listened and said, ‘anything you need, what can we do?’. The people that have shown empathy, professionalism and exemplified what it means to value the human side of leadership and management. The impact that these people have had on me, and my family is so significant and is something that has contributed to my life beyond measure.