Grieving the Loss of the Perfect Child

From the time a baby is conceived, parents and close family start weaving their dreams around it. How would it look like, a girl or a boy, what kind of a person will she grow into and so on. We all have our image of a perfect baby, the perfect child. He is an embodiment of our dreams and aspirations.

When we found out we were having twins, we were ecstatic. Images of fun filled laughter, two little babies gamboling together, two pairs of little feet running around the house, filled our minds. We loved watching twin videos on YouTube, tickled with the thought that this fun would soon be ours. When Abeer and Anvay were born – we talked often about how they would turn out when they grow. Abeer, the attitude kid, looked set to become a Rockstar and Anvay, with his perfectly proportioned body was going to be our super model. We imagined the two boys and their same aged cousin, in their early twenties at Arnav’s wedding. Three lanky young boys, having the time of their lives.

But now I am not so sure if these images would ever become reality. Because unknown to us, while we celebrated the birth of our twins, Anvay had sustained brain damage. Anvay, the healthier of the two, who was not even a likely candidate, had sustained brain damage. I have no clue, what happened between the two minutes between the time they both came out, that led to this. Their birth was apparently normal. The doctors did not find any anomaly. In fact, they did not even do an MRI when Anvay was discharged (which they did on Abeer) from the hospital – I am assuming because nobody expected what had happened.

The news that your baby is damaged is devastating to any parent. Devastating is actually putting it very lightly. It rocks the world of the parents. All the dreams, hopes and desires come crashing down. The process of grieving begins. Yes, it is grieving. You grieve for what could have been, what should have been and why it isn’t what should have been.  The parent grieves for the loss of the perfect child, the imagined child. A parent will typically go through all the stages of grieving – denial, anger, bargaining, grief, and eventual acceptance. I recently read a blog from a parent who writes about grieving for a child she has not lost.

I like to believe I am stoic. And I am, to the extent of being able to control my emotions outwardly. I took the news as normally as possible – showing concern, but able to hide the panic. Reading pages after pages on his condition and internalising all the good and bad scenarios. I managed to harden myself to the extent of being able to talk about it without losing composure. I told a few friends/colleagues – but I opened my mouth only when the instinct to break down had been pushed down to the depths of my stomach. I can proudly say that I managed to explain his condition as objectively as possible. The discussions with the neurologist were kept as matter of fact as possible – even humourous.

 

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But grief has a way of coming out. You hold it tightly at one end, it will slip out from another. I remember watching Dunkirk and realized I was crying – it had nothing to do with the movie. Sometime on a plane – watching Hello Zindagi, I discovered my face was all teared up. I can’t remember the number of times I have cried sitting in the backseat of my car, safe in the knowledge that my driver doesn’t have eyes in his head. But I learnt to let the tears flow. They needed to come out, for us to be able to move ahead and plan for Anvay’s recovery, with a clear head.

Anvay was 6 months old (corrected age 4 months), when his pediatrician said that his muscle tone is high. It made no sense to me. He then went on to say something about spasticity – which rang a bell in my mind. Spastic? Does that not mean mentally retarded? (it does not) I was immediately horrified and the image of a helpless, mentally retarded child went through my mind. And laughably, one of my thoughts was whether he would ‘look’ normal. That, really is the least of my concerns.

Once we got the MRI done, we got a confirmed diagnosis of PVL – a form of white matter damage in the brain. Our pediatrician (he is a great guy) told us not to worry. He had seen many cases, where children with PVL after initial years of struggle went on to lead perfectly normal lives. Though he was concerned about his CVI – which is a visual impairment where the eyes can see but the brain cannot perceive. But when we found out that Anvay was also having seizures, also known as infantile spasms, he sounded pessimistic for the first time. And that I think also finally sagged my spirits.

However, there is hope. His spasms seem to have been mild and were treated within one month. They have not recurred since and we have our fingers crossed till he turns two. He is improving – albeit slowly – but that is expected. He is rolling now, holding things in his hand and the other day, he ate a biscuit on his own. Every little step he takes is a cause for great happiness. He is a very happy baby and has the loveliest smile – it makes our day when he smiles at us. His naughty little personality has also started to shine through!

I talked about our dreams crashing. But I had also started the new year with a new hope. We are rebuilding our dreams. I believe in the human spirit – that it can rise up to any challenge and overcome it. I am sure Anvay and we will find a way. If one door closes, there are many others waiting to open – we just need to be willing to look for them…

Anvay IS my perfect child – as different and as unique as my other two….

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Death Comes as the End

This is the cover of an Agatha Christie novel. Yes, we all are big Agatha Christie fans here. We have proudly displayed almost her entire collection in our drawing room. My dad also liked Agatha Christie. In fact, I think he was the one who instilled the love of Agatha Christie and for that matter all detective/ mystery novels in us. A very long ago memory – perhaps when I was 7 or 8 – lying in bed with him at night time and listening to the story of “Why didn’t they tell Evans” – another Agatha Christie novel. I remember the fascinating cover of the novel very vividly – a huge skull covering almost the whole page.

But despite knowing that Death does come as the end, I don’t think anyone is ever prepared for it. Even in the case of terminally ill patients, even in the case of a 90 plus parent… you always wish the time with them lasted some more. And so do I… I wish he had been there to see Abeer walk (he walked a few days after papa’s death); I wish he had waited to see Arnav’s new school; I wish he had waited for me to establish this blog – a platform I had wanted to use to share his ideas also with the world… I wish; I wish; I wish…

Birth and death, despite being the most basic truth of human life, both seem equally unbelievable to me. Every time I look at my kids, I wonder at the wonder of life. Of how life emerges from another human being. I cannot believe that they took shape inside me. That they were crafted from a cell. Similarly, death. I am just unable to wrap my head around the fact that a living, laughing person just suddenly disappears into nothingness. And you have blank walls staring at you, when you want to reach out to him. The person is no more. NO MORE.

I don’t think a day has gone by since he left us, that I have not wished that things had turned out differently. Not a day, that I have not missed him. The wound somehow has become deeper in fact. They say time heals – so I am waiting for that to happen. But many have also said that you can never get over the loss of a parent. And it is very different when you lose someone who lived with you. Every little thing in the house, every room screams out his absence. I remember the day I was hanging out washing – I wash clothes by colour – and it was whites that day – and there weren’t any of his baniyans (vests) to hang. I don’t think anything else made me feel his absence so strongly.

The video camera battery that he had asked me to bring from the U.S. – which we ultimately used for his remembrance meeting. The half full case of weekly medicines (medicines eaten till the morning of his stroke) – the unfinished cornflakes (he only liked Mohun’s – Kellog’s didn’t do it for him) – his drawer of tools and PCBs and other electrical equipment – the Nano which he drove (it killed me when Arnav asked who will pick him up from school now or who will the stuff in nanaji’s drawer belong to now) – the weirdly pained expression with which Arnav talks about him – the cooler which he set up every summers – each and every thing a painful reminder of his absence.

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I would meet Papa quite often either going down the building or coming up as I came back home in the evening. And kurta pajama was his usual attire. Yesterday evening, when I came out of the lift on our floor, I glimpsed a kurta pajama, before seeing the face. My heart stopped for a millionth of a second. But of course, it was not him. So many times, when the phone has rung, for a split second, I expected it to be him. And then there is his image of saying bye to me at the lift, feeling slightly cold and I telling him to go back to the house  – as I left for the airport to go to DC – the last living image of him….

papa-photo.jpgFor his remembrance meeting, we had picked a very happy picture of his – we didn’t want the usual passport photo as his reminder. After the meeting, we kept his picture in our dining room. But we soon realized we didn’t want a reminder of his absence. Without it, we could at least make ourselves believe he is in another room.

And sometimes I wonder what my mum feels – if this is how strongly I feel about his death. That is what we are all condemned with – life after death. Not that of deceased, but of the living. The lives that we all lead, after losing someone close. The silent grief we all carry, unable many times to share with others. When the mourners leave, we the living are left behind to pick up the pieces of our lives, lives after death.

Anyway, as people say, I hope he is in a happier place now. He sure seems to have been collecting some interesting people. After getting over the shock of Sridevi’s death, my next thought was that papa will have some good company there! And now Stephen Hawking. “I regard the brain as a computer which will stop working when its components fail. There is no heaven or afterlife for broken down computers.” – words, by Stephen Hawking that my sister messaged me this morning, saying she thought of our dad while reading this message. But just in case they are both wrong, I would like to imagine they are discussing the secrets of the universe somewhere!

By the way, this also was not a planned blog. I had actually planned to write something happy this time – about Abeer, who is increasingly becoming naughty. But I just could not write. I guess this needed to come out before I could write any further. Now that I have written about Death, I hope I will be able to write about Life. So long!