“Genetic test report has arrived. Can you come and meet me?” our Pediatric neurologist called. This report changed our life. Our one-year-old was diagnosed with Spastic Paraplegia, a condition that leads to physical impairment, especially in standing and walking.
Sitting at the neurologist’s clinic, my husband and I were all ears and nodded. Certain things we understood, but many we had to find answers for ourselves.
Coming out of the clinic, I looked at my husband and said, “What the F*ck?”. We knew we had hit a giant iceberg. How do we steer our ship and stay afloat?
What should I do now? Who is the right doctor? Is there any forum that can guide me? How long will it take? How will my child feel when she grows up? Will she be able to go to school? Will she ever get independent? – Mind shrouded with thoughts.
Phew! I took a deep breath. And jotted my recipe – to win in life.
“We can’t cure the genetic condition. But we can make her do things better.”, our physical therapist advised. Normal mothers with daughters hanging out on swings and monkey bars, but we were boarding a rollercoaster.
Spring evenings at the park were replaced with an everyday visit to the physical therapy center. Occasionally we would visit the park, and other parents and children would stare at Nishka’s leg braces. Their strange eyes had too many questions? Did she fall? or had an accident?
Many a time I would answer them about her condition. But sometimes I would simply ignore it because I was too tired of looking at the strange eyes.
We had many challenges coming on the way, and we had to fight them like a video game street fighter. We would keep getting obstacles, and we tackle every one of them, till we finish the lap.
This triggered step one of –
my recipe to win in life.
Step 1: Condition your brain.
Conditioning of the brain requires acceptance.
Accept what you got.
When you feel you hit the iceberg and you are going to collapse.
Hold yourself there.
It’s still not the time to fall. It’s time to start.
It’s the starting point to your new path.
“Repetition and patience,” Alok’s mother told me while sitting in the waiting area of the therapy center. “We are coming for the last three years every day here and I see a slight improvement.”
I understood we have to – break down to win in life. Our big goal was a bouquet of many small goals. Every small goal that we achieved was a big win for us.
It was not a race where one wins and the other loses. Our goal was to challenge our own goal. Win one and move to another one.
We were not stagnant like a lake.
We were moving like a river.
Sometimes slow, sometimes fast, colliding with rocks, but never stopping. Never giving up.
This made me set my step 2.
Step 2: Pin your destination and see where you want to go.
Aim for Big. Big is a relative term here.
Decide your own ‘Big’
How big is your ambition?
It was eight months since we started therapies. We visited all the leading hospitals in the city to take physical therapy. I attended a seminar where the top doctors of the country visited.
To my surprise, I got to know these traditional therapies are obsolete and less effective. We wasted crucial time, effort, and money already.
It was depressing however, our belief stayed.
We had to win for the time we lost.
Several times we would get annoyed that we have to start all over again. But to get better and to be more efficient, we need to keep trying new things.
We learn and attempt, and explore different possibilities.
Keep believing and Keep going.
My step 3.
Step 3: Believe in yourself and keep going.
‘When you don’t know, Ask! ‘, I read on a poster. It looked like a sign for me. The new ‘Neuro-developmental therapy’ was very new for me. Not many people in India were aware of it, and they were continuing with traditional methods.
“I am not going to be part of the herd“, I told myself. I had to find my answers. We live in a connected world. Why do I have to only ask people around me?
‘Hereditary Spastic Paraplegia parents and caregivers’ – I found a forum on Facebook. I browsed the member’s list and perhaps I was the only one from India at that time.
I am good at networking and being people-friendly. I asked and asked, posting one question after the other. The community was very supportive. There were parents from Italy, the USA, Australia, the UK, and several parts of the world. We all shared the same emotion, same concerns, and shared our resources.
If you don’t know, find people who know. Don’t get stuck to your primary circle. Go out, meet people, and don’t get scared to write to anyone. What worse can happen? I may not get a reply. But if you do, then it’s worth the try.
I discovered step 4
Step 4: Don’t resonate with pain in the a$s
I was sitting in a play area and a parent looked at me with pity. She wanted to share my pain and resonate. She told me how some relative of hers had a child with Cerebral Palsy and was wheelchaired. So am I supposed to feel sorry or get sad?
A wheelchair is for independence and accessibility, I wanted to tell her. But I knew Mrs. Pain wants to make me realize that my life is in pain.
I stood up and started playing with my girl again. Well, Mrs. Pain, I know how to balance my life better than you. I party hard, travel, write and pamper myself at the salon; while you sit with people and become a pain in their a**.
My step 5 was crisp and clear.
Step 5: Avoid wet blankets
You don’t have to be answerable to anyone. You have to answer to only one – and that’s you. Choose people with positive vibes only.
Nishka started going to primary school. And I had told her not to be shy with people but answer confidently. I pressed for the seventh floor and some young children boarded the elevator. They felt awkward and looked at Nishka’s legs which were shaking with a spasm.
They were curious and I could sense their young minds are filled with questions but are hesitant. I think we somehow have in our mind that asking about someone’s disability could be impolite.
I want to change this perspective and tell everyone that asking about disability is not impolite but looking at it with pity certainly is.
Before I could answer anything to these young minds, Nishka with her spastic legs laughed and said, “I have dancing legs”. All girls laughed out loud. I wonder how children turn destinations into joy so quickly.
She taught me Step 6.
Step 6: It’s okay to laugh at yourself.
Saying funny things about yourself can change people’s outlook toward you. It makes them comfortable, reach you with confidence, and become friendly.
“God is in you. It will make you do whatever you think you can do”, I was giving Nishka a regular lesson on motivation. We say so many things to our children, and we don’t know if it makes sense to them or not. But as a parent, we do our duties to pump them up. To make them strong and fight.
We say and we forget, but their minds are listening and processing. One day she surprised me by standing with zero support for a minute singing the national anthem in her own words.
I was so happy and asked her how did she do it?. She leaped on me and whispered in my ears, “My god inside me told me I can do this, so I did it”.
My step 7.
Step 7: Identify your power words.
The words that make you feel powerful, give you energy and a sense of achievement.
She has figured out her power words – I CAN DO IT!
“You did it my girl”, I hugged her with pride.
Be however our fuc*ed up life is, we all figure out our receipe to win. Please write to me how you overcame your challenges, I would be happy to receive your emails. Or do drop a comment below if you liked my story.
You might love to read my other story mistakes being a mom and I am thankful I did.