Veena Sashikumar
Life’s battle don’t always go to the stronger or faster man. But sooner or later the man who wins is the man who thinks he can
I first heard these words during a speech by a dear friend when I was a university student. Since then, the profound words of Walter D Wintle have deeply resonated with me, serving as a guiding light through various challenges.
I am Veena Sashikumar, a digital creator and speaker, dedicated to helping and supporting parents of children with additional needs as they navigate from breakdown to breakthrough.
Throughout my life, I have faced numerous tests of strength. My mother’s illness and her passing when I was just 13, followed by the challenge of resetting our lives. Then, my father’s passing right before I moved to Sydney. Each time, I emerged from these trials stronger than before.
Nine years ago, the ultimate test of my strength began when my two-year-old daughter was diagnosed with a brain malformation, necessitating surgery. While the operation was successful, it left her with lasting challenges, including autism spectrum disorder and severe intellectual disability.
As a mum I was gutted. When we have children, we dream of their bright future and their life ahead. And here we were as parents who were told your child will not walk or talk and we must start thinking of her future being in a home. I was filled with rage and sadness.
Amidst the turmoil, my daughter’s infectious laughter and radiant smile became beacons of hope, bring light even in the darkest moments. Yet, the weight of societal judgments and the constant barrage of medical appointments took a toll on my well-being, leading me down a path of exhaustion and despair.
One such day when I was tired, and I collapsed on my couch in front of the TV and my daughter was next to me playing with her new toys. I slipped into an afternoon nap. My dreams were almost always about the diagnosis and what I was told and what’s the future going to be like I would wake up with palpitations and feeling of being choked. That day was different, my nap was broken by a beautiful laughter.
I woke up and saw my child smiling at me and laughing. I had a moment of awakening I had a JACKASS moment. I felt like I was letting her down. There was this living and breathing piece of divinity in front of me and I am drained and bogged down by people who don’t know us and were passing judgements on her life. The worst part is, I was letting them. I was letting the negatives be the clouds stopping the sunshine.
Once this realization hit it was hard to sulk… It was hard to cry. I finally had a clear goal in my life. It was like you’ve found the map to gold and the only thing you can do is start digging. I decided I am going to build that beautiful child into a beautiful human, and I am going to rebuild myself, so I don’t fall in the journey. This started my journey from breakdown to breakthrough.
It was not easy. Unlike in movies when the hero decides to become rich and in one song it’s all done and dusted, and he is now a multimillionaire. This is life. Finding the right spot to dig took forever. But the vision was clear, and the mind says it can!
Where to start was the important question because there was so much chaos. Some steps like finding a therapist or a specialist was easy but feedback on the day’s therapist was difficult to get because my social circle was non-existent. So, I got myself into groups on Facebook that were for mums /parents of children with additional needs in Australia and more specifically in Sydney. A lot of it said I should have goals written down for the child imagine what the future will look like, and I really couldn’t do it. It would lead me to palpitations again. It was really overwhelming to look at that big picture. It was not a pretty one and that scared me.
I went back to the drawing board and said this method is not working. I decided I’ll listen to Einstein and take a new approach to what I am doing. Instead of the big picture I thought I’ll look at the next step, next move, next action that will make life better. I cut up the big picture into small bits and started looking at each bit as a separate picture. In short, the small picture. This was not scary, and it started getting results. My mind was cleared off from unnecessary worry. I felt unburdened.
That became the new formula. When anything is overwhelming, we would break it down to a small picture that’s not overwhelming and then work on it. The journey of building and rebuilding progressed a lot better after we started looking at the small picture.
This journey started 6 to 7 years ago and there’s a lot more to go. But reflecting on the journey thus far, I am filled with pride at the milestones we have surpassed:
1. My child who was labelled nonverbal and immobile is now a non-stop chatter box and she runs and jumps and climbs. Her severe intellectual disability is now mild to moderate. I guess labels and diagnosis are not permanent they can change in time with love, dedication, and hard work.
2. Recognizing the need for culturally relevant support, I initiated a community for Indian mothers navigating similar journeys. What began as a modest group has blossomed into a network of over 300 individuals, offering invaluable solidarity and understanding.
3. Prioritizing self-care has been instrumental in sustaining my resilience. By tending to my physical and mental well-being, I have regained the strength to fulfill my roles as a caregiver, parent, friend and professional.
As I continue this marathon of caregiving, I am committed to sharing my insights and learnings along the way. By celebrating our achievements and embracing the collective wisdom of our community, we can navigate life’s challenges with grace and resilience.
To those embarking on similar journeys, I offer the following insights from my playbook.
1. Focus on the Small Picture: Instead of being overwhelmed by the uncertainty of the future, concentrate on actionable steps that yield results and tangible progress. Each small victory contributes to the larger tapestry of success, and you will see a picture emerging.
2. Seek Community: You are not alone in your journey. Reach out to others who share your experiences and lean on their support. Strength is found in unity, and together, we can overcome even the greatest obstacles.
3. Prioritize Self-Care: Remember that caring for yourself is essential to effectively supporting others. Nurture your physical, emotional, and mental well-being, ensuring that your cup remains full so you can pour into the lives of those you love. Remember the airline announcement. Wear your mask first before you help others in your care.
4. Celebrate Your Achievements: Take moments to reflect on how far you’ve come and acknowledge the progress you’ve made. Each milestone is a testament to your resilience and serves as fuel for the journey ahead.
As I persist in my journey of learning and personal growth, I extend a warm invitation to fellow travellers to join me on this transformative odyssey. Together, let’s inspire and uplift one another as we navigate the labyrinth of life’s challenges. Your insights and contributions are invaluable as we forge ahead, one step at a time.
Follow and connect with me on Instagram and message me especially if you would like to join the group of 100s of mums helping each other with this journey.
https://www.instagram.com/vnasash?utm_source=qr&igsh=c29kOWtuM3hta3Vm