“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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I am not sure if words can comfort. I just want to say that there may be no answers at all. You have been there for your baby at every step and will always be. Your love for each other is what counts. Sending my love and prayers to Anvay and you
Thanks so much 😊
Loved your real life story. Hurdles galore. Yet there is hope galore at every step. Hats off to your attitude. It’s an arduous journey, but there is a higher force that is lending a hand and standing behind. Salutations to you and your little Anvay.
Thank you 😊
After Dad’s sudden death, I have learnt to take each day as it comes and cherish it for the memories it creates. I have learnt that everything and everyone around us is not permanent. So pour all your love and hope into today, the future is ephemeral at the best!!!
I always had the greatest respect and admiration for you as an amazing mom. You are doing an amazing job raising your boys despite abnormal circumstances. ❤️😍😘
Thanks so much. Means a lot coming from you ☺️
Dear Sakshi, I saw the link to your blogpost on the ABM parent/caregiver FB group. Thank you for taking the time to express your thoughts and emotions. It is invaluable for other parents of a child with special needs, as many feel the same. Parenthood is a path of learning who we are and as much as parents are the first guides to their children, our children are also our teachers Here are some thoughts about what you wrote. I hope it helps. “I can control my brain, but my heart?”
The heart needs no control. The heart is the center of the purest aspect of your whole being. With love and respect I say to you: your mind has turned against you. the negative thoughts in the mind dampen the heart. All you may control is to keep the endless thoughts of guilt, doubt and fear tugged away in your head and not let them spill out into words and actions. And that is no small accomplishment! Those negative thoughts are generated by your conditioned personality. You can cultivate a calm and pleasant mind with positive affirmations, which will eventually override the negative mind. You love your children with all your heart. Tune deeper into your heart and let it guide you.
“Every one of us around him has changed – from the inside. He is a constant source of love, happiness and inspiration. 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?”
Of course, you would – AND he is whole already you know that already. Is it our intellect and your actions that make us whole, or is it our wholeness, when we realize it, that enlivens this physical form and gives purpose to our thoughts and actions?
“What does the future hold? I don’t know. And I fear the unknown.”
We tend to fear the unknown when we have the need to control our lives. Even if we are aware that we cannot control everything out mind likes to convince us otherwise.That is also the reason why you feel responsible and consequently guilty for what happened with Anvay. Living in this physical dimension, our state of awareness is that we create everything with our thoughts and actions. We are the doer. But is this true? What if we let go of the “compulsion” of doing and spend more time cultivating being?
In moments when we are fully present in being we are connected to That which is abundant and gives providence. In that state of awareness there is no fear of the future.
Anvay reflects that to you. He can “be” more because he has not been able to get lost in the drunkenness of doing. That is a blessing indeed, maybe not so readily seen.
“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. ……..
That must not be so at all. The surgeon’s advice comes from a place of deep immersion in the fixing paradigme. Connect with the parents on the ABM FB group. Recently a mother posted about this subject.
Many blessings of love and light,
Thanks so much for your thoughts. Really appreciate..😊
Sending hugs your way, Sakshi. Parenting is the hardest thing I’ve done in life and yet I can’t imagine your struggles…stay strong my friend.
Thanks so much 😊
Hey Sakshi, your post is so raw, so vulnerable, I could not just pass by without a comment…you voice what so many of us with kids with special needs feel, and fear….and how hard it is, but inevitable, that we do live in the moment and savor the joys. All the very best as you keep journeying and journaling!
Thank you so much 🥰
Lots and lots of love to you and Anvay.
Thank you 😊
We try to make sense of life every moment and yet our life doesn’t make sense many a times. The truth is life is meant to be lived and loved. The blog is a reminder of living with joy and sorrow, of happiness and fear, of hope and of depair. It’s a reminder of living life to the full come what may.
Thank you Kundan. You seem to have captured the essence of how we (me and my family) are trying to live our lives.