I guess before asking for your prayers, I should give you some background on why we are asking for them. This August, Anvay’s legs were operated on. His second surgery since 2020. Ideally, the second surgery should have happened way back in 2021 – to remove the pins inserted in his hips during the first surgery. But to be honest, I was terrified to put him under the knife so soon. The scars from the first surgery were still there – on my heart – and I did not have the guts to go through that again, ever. So, I kept putting it off. (the thick long scars on his hips are there to stay forever.)

But last year, when the orthopaedic doctor told us that Anvay needs some more surgeries that might help with his mobility – I finally mustered the courage. And we decided to combine 3 surgeries in one.

I told myself that Anvay is older now so he will be able to manage it better. And then I started to tell him everyday that he is going to have a surgery and will have some pain. I do not know how much he understood. It is difficult to see one’s child in pain – it is even more difficult when you are not sure how much the child understands – to me it felt like I was betraying him. He was so happy when he went to the hospital – he did not know what was coming.

Surgery

But he had been great till now – barely wincing for all his blood tests – which happened in his dad’s lap. Even when they wheeled him in for pre-op prep – dad was the one who was ahead – I just couldn’t see them put the needle in him – but I stayed and made myself watch. He stayed good. My heart stabilized. And they took him in.

Someone told me it will take 2-3 hours max. So we all sat outside – my mom, Kapil, our nanny and I. After 2.5 hours, we started craning our necks to see if we could catch the surgeon coming out. Half an hour went and then another half. We started pacing in the corridor. Finally I asked them how long it will take – turned out this was going to be a 5-6 hour surgery! Afterall they were performing 3 procedures.

Finally, they called us into the post-op area. The first thing we heard were a child’s pitiful cries. And then, with a jolt, I realised they were coming from Anvay.

How was he already out of anaesthesia?

We were completely distressed to see him shuddering as if he were cold, crying loudly and seemingly in terrible pain. I felt a flash of anger. Why hadn’t they kept him sedated? Why hadn’t they restarted his epidural? Why hadn’t they called us earlier so we could be there to comfort him?

And then I noticed his legs.

They were both in full casts, held wide apart by what looked like a stick joining them at the knees. I had not been expecting that at all. Somehow, in all the conversations about the surgery, I had never really pictured what he would look like afterwards.

Later, I understood that they had done their best and that some of this initial discomfort was unavoidable. They assured us that he wasn’t actually in pain and was still heavily sedated.

Kapil bundled me out of the room and stayed with him for the first few hours.

He is good at that.

I stayed the first night – was not easy – but we survived. Kapil and I alternated for the next few nights and luckily his discomfort was not as bad as the first time. Maybe he really had grown.

5 weeks later….

Today, the cast was finally taken off. And, by the way, the procedure is pretty terrifying. They cut through the cast with what looks like a small drill with a rotating blade. The last time, the person doing it actually cut right through the cast and into his skin. He still has a little gash on his knee from that.

It doesn’t help that loud noises scare him. We can’t use the blender or the vacuum cleaner at home if he is within clear earshot. So I was expecting this to be quite traumatic for him. But apart from the initial fright, he managed beautifully. We put some cotton in his ears, and he kept smiling through most of it.

The doctors had warned us that there would probably be some pain and stiffness after being in a cast for so long, and sure enough, there was some crying at the beginning. It was also hard to see how thin and blackish his legs had become, and the sores that had developed and festered inside the casts.

But soon enough, he was back to being his playful self. He enjoyed the car ride home (2 hours!), stretched out on the makeshift bed we had made across the back seat (legs still wide apart due to muscle memory), and seemed quite happy to be moving through the world again after five weeks of being mostly confined to a bed.

Once we got home, he went straight back to his toys as if nothing had happened.

I asked him if he would like to go out for a movie, and the answer was a resounding HAAN! (yes).

Of course he would. For five weeks, his world had been reduced to the bed, the bedroom and the occasional change of scenery. Every few hours, he was turned over like a pancake to keep him comfortable. Now, suddenly, there is the prospect of getting out, seeing people, going somewhere.

He is ready!!!

And now we hope…

After we had got Anvay’s diagnosis – my computer password used to be ‘things will get better’ and later it was on the lines of ‘Anvay will walk this year’ – I was trying the power of manifestation. But after years passed – I lost hope. And now I have a simple numeric PIN to my laptop.

But this surgery has revived my hope again. His muscles have been elongated which should help him stand better and his muscles have been relaxed by Botox which will hopefully help us train his legs. The next few months will be about intensive therapy and, hopefully, making the most of what the surgery has given him.

So I am just lighting a small lamp of hope – to start with, I would just be grateful if he can stand on his own. And then maybe take a few steps….then walk with a walker….and then on his own.

Run? I can’t even let myself go there – the number of times we have all had dreams of him running and playing with his twin Abeer – that even thinking about it brings a strange mixture of longing and heartache.

So for now, I am keeping my hopes small.

But I am allowing myself to have them again.

So just hope….and pray with us…

Pray for him.

This blog post is part of ‘Blogaberry Dazzle’ hosted by Cindy D’Silva and Noor Anand Chawla in collaboration with Ratna Prabha