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Shortly after her first birthday, Ira was diagnosed with Hypotonia.

We were advised to commence Physiotherapy for her condition. We consulted with her pediatrician the same week, with the medical reports. The pediatrician, in his calm demeanor, stated, 

'The parents' approach to such a problem is crucial. I have seen instances where parents have given up, leading to the child's deterioration despite their potential for recovery. Conversely, I have also witnessed cases where children with seemingly hopeless medical conditions have recovered due to their parents' relentless and positive attitude.' 

I was still grappling with the severity of Ira's condition. The infamous 'Why me?' syndrome had begun to set in. We met with a physiotherapist who thoroughly analyzed Ira and initiated the physiotherapy sessions. These sessions were challenging for Ira, a tiny human struggling to stand or sit independently. With her stern face and expert handling, the physiotherapist was instrumental in our fight against Hypotonia. Every time, it was disheartening to see Ira cry, resisting the exercises and instructions, displaying a rebellious streak (a trait my mother insists she inherited from me!). 

One day(like many in a month), I found myself mentally drained as I accompanied Ira to her physiotherapy session. I asked the physiotherapist, 

'Will she ever walk, Doc?' 

I looked at her, devoid of hope, not really expecting any answer. The physiotherapist, holding Ira firmly, looked into her eyes and confidently asserted, 

'Yes, she WILL.' 

Subsequently, we had Ira's first set of Ankle Foot Orthosis (AFOs) made for gait stability and for compensating for muscle weakness. The ugly appearance of the shoes was a constant reminder of the challenge we were facing. Anyways, Ira was asked to choose between pink or blue shoes to lighten the mood. Yay! 

We often got random questions and comments from people when we were out.

'What is the problem with the girl?'

'She can't walk without these shoes?'

'Why does she walk like this? Birth defect huh?' 

'Ah. Your destiny! What else..'

These loose comments, interactions were new and difficult for me to handle. I was particularly very conscious of the public scrutiny. Days passed by. 

…

One weekend, we decided to dine out with my maternal cousin at a 'fancy' restaurant, as she likes to call them. I got a super cute Polka Dots frock for Ira for the lunch outing. To avoid the public's prying eyes, comments, and questions, I sheepishly covered Ira's AFOs with leggings(nowhere matching the special frock!).  

You know, that old saying 'It takes a village to raise a child'?

However, my experience suggests that we have lost the 'village' necessary to raise children in a nurturing, creative, and safe manner. We humans (most of us) have gradually developed traits such as excessive concern about others' opinions, fear of negative evaluation from our tribe, and an extreme urge to 'fit in'! The constant thought (or rather 'overthinking') of being different from the tribe or dealing with less known problems was similar to repeatedly dreaming of an old enemy!

'Why is Ira wearing these boring pants with this smart polka frock?'

My cousin asked, slightly confused. She was taken aback when I explained my mediocre reasoning. 'Seriously!? Why bother about anyone? Who are they to judge Ira? You don't need to hide anything from anyone. Get rid of those ‘ridiculous’ pants!' she exclaimed. 

If the kid needs the AFOs to walk, why should there be any shame in it?

After a lot of thinking, re-thinking, analyzing - guess what, hanging out with my cousin felt like a game-changer for me. I stopped using leggings to conceal Ira's AFOs. Once back home, there was a wardrobe change for little Ira. She was now a girl known for her shorts, AFOs, and her relaxed, tomboyish look.

I have kept that soft cotton polka dot dress in my closet for years, just for the memories! This and many such incidents have significantly changed me over the last decade.

Embracing my 'rebel' trait, I guess I am now more rebellious in all aspects. I exist on my terms and do not force myself to fit in where I don't belong. This approach has brought me peace to some extent!

• Blog post crafted on thinkdeli.com

• Written by Jaee Jadhav Garad

• March 2024