I didn’t know I had a disability when I had my two daughters 11 and 9 years ago. But I knew at the time that I struggled with many tasks that come with having a new baby. I couldn’t use nappy pins, I struggled to dress them. I couldn’t undo clasps, clips and straps on any baby equipment. I remember searching for a pram that had a clasp that I could undo. It wasn’t easy, let me tell you!
But I just thought that I didn’t have strong hands, and really didn’t think anything of it.
As the years passed, I noticed changes in my hands and my feet. My foot would go numb if I walked on it for too long, and everyday tasks gradually became harder, until in 2015, my feet and hands deteriorated dramatically. So much so that I couldn’t drive, or walk anywhere more than a few metres without my feet going numb and feeling like I was stuck in sand and “stranded”.
It was then that I was diagnosed with Charcot Marie Tooth disease. A progressive neurological disease that affects the function of the peripheral nerves. What this essentially means is my peripheral nerves (mainly my feet, lower legs, hands and arms) are deteriorating and I am slowly losing sensory and motor function in the affected areas.
I was frightened, and I started to have panic attacks. I felt the trajectory of my life had changed, and that my path was set in stone. I now wear custom ankle foot orthotics, have a mobility scooter I use on long outings, and I just recently began driving with hand controls.
My condition affects my day to day activities too. I can no longer clean my home, undertake food preparation and cook for my family, I tire very easily, I can’t do up buttons, and I haven’t been able to wash and style my daughter’s hair. That is just a few of the things I struggle with or cannot do, there are plenty more. I experienced quite a lot of guilt, but I also knew I could give my family my presence, cuddles, and time.
Although my disability has progressed and I can’t do as much as I used to, I have also evolved and grown as a person. You see, when I was diagnosed, I also started my self development journey.
I started with journaling and meditation. I began studying. I worked on my self-acceptance and learned self-compassion. I learned what it is I truly enjoy in life. I learned what truly matters to me. I learned what kind of Mother I want to be, and what I want to contribute to my family and the world.
In 2021 became a Life Coach and Chair Yoga Teacher, and am about to study a Diploma in Counselling. Most recently, I started my new business Mamability – Life coaching and NDIS Empowerment Coaching for Mother’s with disability.
I’ve learned that I can grow and evolve, and feel happy and fulfilled, whilst at the same time be tired, struggle with the physical things, and experience uncomfortable or unhelpful feelings like frustration, guilt and anxiety. I go through the grief/acceptance cycle often. I experience Mum guilt, but I also feel a sense of accomplishment and contentment.
I want other mothers to know that it is okay to experience all of the feelings. I want us all to feel like “regular” Mums and Women.
I want us to feel confident in parenting in our own way. I want us to know that we aren’t perfect (no one is) but we are amazing parents. I want us to know that we have valuable things to offer our children and society. I want us to know we can chase dreams, achieve the things we desire, and that we can live life in our own way, in our own lane.
This is why I created Mamability. I want to support Mothers with disability as they work towards the things they want to achieve, or work towards self-compassion and self-acceptance, or to support them in finding clarity in how they want their life to look.
My signature program – NDIS Plan Empowerment Coaching – was created because I see our NDIS plans as powerful and empowering tools to support us in our parenting, and support us in taking care of our family environment (as well as other areas of our lives). However, I know from personal experience that these plans can bring up many feelings of disempowerment, anxiety, confusion around how to use our plans, and so much more.
I decided to make it my mission to support as many women on the NDIS to feel empowered and capable and as though they are moving forward in their life, and to view their NDIS plans as tools to help them achieve this. For the moment I am only able to help self-managed, and some plan managed participants with this service.
But for now I want to remind you, beautiful Mama, that you are amazing, worthy and deserving of becoming the Mother you were meant to be, creating the life you want to create.
Author: Vicki Wilson (Mamability Life Coach)