“Will he be able to lead a normal life?”, Kapil asked the pediatric neurologist. We had just received Anvay’s diagnosis and were trying to come to terms with what it really meant. ‘Brain damage’ filled our hearts and minds with fear and all we wanted to know was if he could lead his life like a ‘normal’ kid – like a neurotypical kid who could run, play and go to school. The neurologist was evasive – he told us that it is difficult to say, that every brain reacts differently, that many people with brain damage go on to lead perfectly ‘normal’ lives. I guess he was giving us hope – we didn’t really understand how much of his brain was damaged nor did we really know what to expect. So, I suppose we jumped at the hope he doled out to us. After all, we had caught Anvay’s condition pretty early and he would get started on therapy at 8 months of age. We were very hopeful that he would reach some semblance of normality with all the timely interventions.

Now he is almost 6 – and it’s been a while since I reached the conclusion that he is going to remain severely disabled for the rest of his life. Nothing remotely ‘normal’. Hope – that I have been clinging to – seems to have been slowly ebbing away, a slow despair steadily eating away at it, over the years. I suppose I sound terribly pessimistic – and maybe that’s true. But also, pragmatic – after all, almost 92% of the brain develops by age 6 – and we have been making very slow progress. Anvay is still non-verbal, can hold himself up in a sitting position for only about a minute or so, cannot stand, cannot feed himself and creeps around on his stomach.

But it does mean that every little achievement, every inch of his progress brings us unbelievable joy – when he finally said mumma after months of making the mmmm sound – it was priceless. Our goals and hopes have also become more measured, more specific – that he converts the nnnn sound he has been making to nani soon. That he learns to sit and stand. That he walks – one day. Fingers crossed.

And the love. The pure, raw love he emanates, is difficult to describe. I suppose one can only feel it. And I guess we are the lucky ones to receive that kind of love.

These past six years, I have lived in a whirlpool of emotions – a wide range that covers darkness and grief to pure, bright happiness. The dark feelings are usually curled up in a ball, tucked somewhere deep inside, as we live our daily lives, busy with the everyday mundane. Sometimes though, the ball unravels, spreads through the mind and body, and all I can think of are the Whys, Whats and Hows and unseemly, illogical fears. Like now.

The Why and the How

Since Anvay’s diagnosis I have never really asked the standard question – ‘why me’ or ‘why us’ or ‘why him’. I guess we just accepted what had happened. But my mind keeps going back to that moment that he was born – because it was likely those first few seconds when his brain was damaged. And I wonder why or how this happened. yes, the twins were premature – but not so premature his brain got damaged. At 32 weeks, this risk is much lower. So much so that the hospital did not even do an MRI when they discharged him. Which was done for Abeer who had a much lower birthweight.

I have heard about so many preemies now – born much earlier than 32 weeks, all doing fine and every time I have wondered, what went wrong with Anvay. I have even wondered if something happened later in the hospital. But I will never know.

I do know that there is no point mulling over what happened, it is what it is. And yet, often my mind wanders back 6 years ago, to that hospital room, to the moment I felt the buttery silkiness of the knife cutting through my abdomen, the first cry and moments later the second cry. The two boys laid next to me, one on each side. Everything seemed so perfect. What had gone so horribly wrong?

A mother’s guilt

Did I do something wrong? Did I cause his condition? So many mothers live with guilt – but mine is of a different variety. Logically, of course I know that I shouldn’t be blaming myself. But can I keep those doubts away? I can control my brain, but my heart? Not really.

So yes, in my darker moments, I guilt trip myself all the way to the twins’ conception. You see I wanted a second child so badly, that after unsuccessfully trying for more than a year, I was desperate enough to try IVF. Which we did, and I conceived the twins. And twin pregnancy is always riskier, more complicated. And over and over I heard through the pregnancy, that IVF babies are fragile. So, I question my decision – should I just have remained content with our first one? Should I not have challenged destiny with science?  (I want to laugh at my absurd thoughts – but cannot control them). But then I backtrack. No, I would never turn back that decision. My babies, my twins – I cannot imagine our lives without them.

Aah so where can the blame be laid – wonders my treacherous mind. Of course, I wasn’t good enough to even get through the pregnancy properly. My mom’s side has many twins. All grown up and healthy. So, my mind chides me – these were women, two generations ago, who gave birth to perfectly healthy twins, and what were you doing, in a medically much more advanced world, that you could not even deliver two healthy babies? And then of course, I see healthy twins everywhere, and my mind repeats the question endlessly.

Every time an expecting mom says, it doesn’t matter if it is a girl or a boy, I just want a healthy child, my stomach gets into a knot.

I was worried through the pregnancy – having been told that twin pregnancy is risky. And I wonder if I worried too much? Did that stress lead to early labour? Or was I so pessimistic that I manifested this situation? Or the fact that I was so scared of losing the babies and did not tell anyone that I was carrying twins? Did all the good wishes only go to Abeer? And Anvay got left out because no one knew there were two babies? So much noise within that my supposedly scientific bent of mind goes for a toss. With no answers in sight.

Is there any meaning to this?

The irony of this situation is that Anvay has enriched our lives beyond imagination. His life is a gift to us. Every one of us around him has changed – from the inside. He is a constant source of love, happiness and inspiration. If any of the thousands of people who have read my words and found hope or solace in them, it is because of him. But at what cost? I feel so selfish saying that his condition has made us better people. Is that the purpose of his life? That his pain makes the lives of others better? I don’t know. And even if it is, somehow that thought does not give me any peace.

As a child he is happier than any other I have met. I have two other children too – but I can see the difference. His smile radiates inner happiness and joy. There is a purity in him that the rest of us do not have. But does that mean that given a second chance, I wouldn’t want him whole? Wouldn’t I want him like the other two? Yes, I would. Any day. Without question.

What does the future hold?

I don’t know. And I fear the unknown. It feels like completely uncharted territory – where we have no clue what might or might not happen. Two years ago, when we thought Anvay might walk soon, we were suddenly face to face with two major surgeries. Now I don’t know what unpleasant surprise might await us. His orthopedic surgeon told us at our last visit in a very matter of fact manner, that once Anvay nears his adolescence, he will likely get scoliosis and then they can do another surgery. Wow! Easier said than done! I am still trying to forget the pain and harrowing memories of the last surgeries!

It is likely that as Anvay grows, his life will get tougher. He is nonverbal – but he understands and has needs, feelings that he would want to communicate. He can’t tell us if he is hungry or in pain or just sad about something. Or maybe the food has no salt. And I often wonder, if this will lead to anger and frustration, when he is unable to communicate what he wants or feels? Will he become aggressive or retreat? How will he cope?

Muscular and other issues that hit healthy human beings in 60s or 70s are likely to hit him much earlier. We can already see the muscles of his stick like legs wasting away due to lack of use. We know that a lot of his internal organs do not work as well as they should – will they lead to bigger issues in the future? More pain? More discomfort? A short life?

And this is the biggest unsaid fear. Many people with his condition die in early adulthood – not because of the condition per se, but because of the other fall outs. But I don’t want to think about it. Not now. Not ever.

And yes, I know why I am sharing these thoughts today, when I have never ever shared them with anyone. Not my husband. Not my mom. Not my sister.

Today a mom posted a picture of her adorable 12 year old on Facebook – his smile as infectious as Anvay’s – his condition similar – his spine curved – scoliosis must have begun – but the brightness of his eyes and the excitement in his expression radiating his love for life. And above that beautiful picture she wrote, “My beautiful brave little warrior gained his angel wings at home in my arms yesterday………”

So yes, that tightly held ball of emotions is unravelling….triggered by the reminder that our lives are tough and uncertain…and I am pouring out my pain and thoughts….in the hope that they are scattered through the space….never to come back to me again…..so that I can take one day at a time in peace….surrounded by love…..and happiness….

And finally, my love, as much as I have within me, to every child or adult who has special needs or is living with disability and to their caregivers. Stay happy. Stay loved. Hugs.

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