By Peta, Shai's mum
As a mum, the best gift I can ever ask for is a happy life for my children. This Mother’s Day, I am thankful because my children are as happy and healthy as they can be.
When my little girl Shai was almost one-year-old I found out she had a rare condition called lissencephaly. This means her brain doesn’t carry messages well, they call it “smooth brain”. She is also non-verbal and has severe epilepsy.
Shai is eight years old now, turning nine this year, and like her condition she is unique. She loves school, especially because she gets to socialise. She’s such a social butterfly! She’s always happy, never cranky and never sad; Shai is just amazing.
I have two other wonderful children and even though being a single mother of three can be a struggle sometimes, I love my little family more than anything in the world.
When your child is first diagnosed with a disability, a million questions run through your mind. What will their future look like? Will they need to go to a special school? Will they ever travel? What are the best support services for my child? What about their siblings; will my child’s disability impact them? And of course, can I do this?
In the end, as a mother, you just do it. Some days you might have a little cry (or a big cry) and then you get on with your day. The best advice I could ever offer another mother of a child with disability is to find your supports and use them. Whether that’s family, friends, your local disability support service, parenting groups, Facebook groups, other parents of children with disabilities; whatever works for you. Find them and use them; that’s what I did with CPL.
I honestly don’t know what I would do without my support system now. Before we moved to Central Queensland we only received two hours of support a week for Shai. To spend quality time with my other children, I had to try to squeeze everything into that two-hour window. If we wanted to go to the beach we would only be there for half an hour before we had to pack up and go home to Shai. I always felt guilty if I used that time to go grocery shopping instead of taking my children somewhere fun.
Until I found CPL, I had been doing everything on my own. I had been a full-time carer for almost nine years. Now we are getting 28 hours of NDIS-funded support with CPL every week! The Support Workers are great; I call them my support team. Shai loves every single one of them, so do my other kids, and so do I!
I can pack the kids up and go to the water park while I know Shai’s being well looked after at home. Or we can finally all go somewhere as a family and bring a Support Worker to assist with Shai.
Last year I had my first enjoyable school Christmas concert with the kids. A Support Worker came with us and even organised the handover with Shai’s teacher. We could just sit there as a family and watch our beautiful girl on stage. It was unforgettable.
The support CPL gives is life-changing. I can’t believe I am even saying this, but I now have the opportunity to go back to work! I don’t mind what job I get, I just want to get back in the community, I want to support my family and I want to start to rebuild my confidence not just as a mum but as an individual too.
Things are really looking up for our family and while there are still challenges ahead we know we will overcome these with the help of the CPL.
Today on Mother’s Day, I want to send my best wishes to all the other mothers out there. I know how hard you work every day, and I want you to know that it is appreciated. You are appreciated.
CPL would like to thank Peta for sharing her story with us, and also say a big thank you to all mums this Mother's Day for all that you do!