We bring you a series of short reads from women just like you.
Source Mamas raising their kids with disabilities. The tears, the triumphs, the raw and the real.
What’s your name and where do you live in Australia?
My name is Pay Pay Lee and I live in Gosnells in WA.
What’s your story, who are you and how did you arrive at this point in life?
I’m a mum of 3 with the youngest having special needs. My baby boy was diagnosed with Cerebral Palsy at 18 months of age. My mission is to give my son the best chance at life.
How has being a special needs mama changed you or your lifestyle?
It has made me incredibly patient and understanding for everyone doing what I do and more. It has made me more determined, ambitious and tired, so tired.
Our lifestyle changed to accommodate all the challenges of therapy life. Juggling schedules week to week, making sure I balance the love between all kids and ensuring everyone is happy. Life is harder than before. However seeing the milestones achieved gives me a great high. The determination in me drives me day to day to keep going.
What’s your biggest challenge right now?
Tiredness and lack of self care. The ‘mum burnout’ has gotten to me. I am only just surviving and just getting by. Over-worried and stressed. I don’t know how to switch off. Also mum guilt, how to get over the mum guilt?
What do you do for you time?
I don’t do anything. I want to and I know I need to but just finding the time and effort is really hard. I do well looking after everyone else but I just can’t seem to look after me.
How do you cope with the really difficult days?
I cry. Sometimes I have a day when I explode so I cry and let it all out and carry on. After all there’s no point hitting the wall and staying there. I pick myself up and just keep going. I remind myself that if I don’t move on my son will not get the care he needs.
What brings a smile to your face?
Seeing my kids laugh. Seeing my son hit his milestones. Seeing my family work so well together and they still love me no matter how badly I fall apart.
What do you need?
I need to relax (but I don’t know how to). I need some adult time but hard to find adult time or even people to talk to. I don’t know many parents that can understand my situation and then having to explain my situation and how I am feeling because they can’t relate to it. It’s a very isolating and lonely life as a parent of a child with disability.
What are your hopes for the future?
I hope my son will be prepared for an independent life and I want to ensure I give him all the tools he needs to get there. I hope my family dynamic stays this way and that my children still love each other and support each other and so I won’t have mum guilt. I don’t want to feel that I have done something wrong.
