It feels like a dream now! Life is nothing but an amalgamation of uncertainty, hopes, sorrows and, above all, naivety. With two slip discs at the beginning of the second trimester of my pregnancy and an immobile right hand, it was not an easy journey. Gulping blended food, my mom and husband helped me to take a bath followed by tying a high bun on my head so that my neck was not carrying too much weight, it was indeed a difficult time.
Towards the end of the 24th week, I was feeling light and when my hand started moving, I was joyous. Little did I realise that it was the beginning of yet another nightmare. Having delivered a child just at the start of 25 weeks, the foolish me thought the child would be stillborn. The doctors were talking about survival statistics, ventilators and financials. The headstrong person that I am, I was laughing inside… how will the child survive? Fast forward, the open eyes of the 800g being that I delivered put me in a state of emotion that I do not understand to date. Imagine a child who weighs less than a packet of a kilo of sugar and is on a ventilator! I could make out the ribcage and other organs from his flimsy body. They asked me to touch him. I was so scared that I couldn’t figure out a space on his body, amongst the numerous tubes, to keep my gigantic finger on. Yes! My hand seemed gigantic in front of that tiny body. I touched his forehead and ran out of the NICU.
The next day there was a strong earthquake and I was arguing with the nurse about how will they take him out, and how will they unplug him to evacuate. Anyway, fast forward to those days of the NICU when happiness was an increase of 5g in weight. He had lost weight after birth and went down to 720g. The day he was 735 g I was so elated. I love Math and these statistical improvements served as a respite for me on those tough days. He was released from NICU after 75 days to be admitted again for eye surgery followed by a hernia surgery within the next 1 month. It was an ordeal for us but I can’t imagine the pain that he felt. But then, the testing times seemed to have just started.
SPECTRUM! How I fell in love with this word when I heard it for the first time, in school perhaps in a Physics class!!! The idea of light and prisms enchanted me! How we perceive something which is just refracted light if we see it through the whole new world of prisms… I used this word in everything I wrote, be it essays, answers to questions or whenever and wherever I could put it in a sentence. The love for this word never ceased.
And one fine day, to my horror, I realised this word loved me back. It came into our lives forever. Our son was “on the spectrum”. For the first time, I dreaded this word. I didn’t want all the love. From denial to awareness to acceptance, I kept moving back and forth from one to another. I felt helpless and useless at the same time. I have been braving this for quite some time and there are days when I seem brave enough to take over the world and love “Spectrum” back and at times I am just “Why me”?
This is just an account of a mom who loves her son immensely but at the same time, I want to love myself too. Grieving whenever I feel like it and loving myself are the first steps that I believe will help my son. This is my journey of struggles with myself and the world’s way of perceiving children “on the spectrum”. After all, at the end each one of us needs to be reminded, he is just a child, just a person being perceived through the prism of pre-conceived world notions.
It took a lot of effort and strength on my part to come out and accept this. Hope one day the world and I understand #Autism and being #OnTheSpectrum better.
Also, life may not always be rosy but we have to strive to thrive. We must move ahead because giving up is never an option.
Here is something which I had written during one of the darker pangs of grief that I faced.
For all those who know and have read about my journey, it is a tough one indeed but many have it even tougher than this. Please also be rest assured that I am a happy person and content with what I have. I have a few dreams and hopes and I genuinely believe in them. Any special parent does not want your pity, they just look for empathy. Call us for birthday parties only if you want to and not because you pity us or as a token of your benevolence. It may sound harsh but trust me, it is harsher for the people who are on the receiving end of this “good deed”!
On a positive note, I am blessed to have family and friends who have stood by me in all the ups and downs of life. Life is never easy for anyone but we can choose to live our moments. And we, as a family and as a unit believe in this passionately and unapologetically. So, if you see a mom writing, reciting, working and letting her hair down while her children are in school and therapy sessions, believe in her and never ridicule her.
This is Sumita Shahi’s Story
Sumita is a a simple yet highly ambitious person who finds solace in work and family! Having a child on the spectrum has made her more grounded and empathetic. You can find her reading and writing on various topics. Poems are love for the clarity and the ambiguity that they bring at the same time.She loves a good book and a good cup of chai!