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.
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….