Almost a year!

It is almost a year. In the last one year, time has flown, crawled, and downright stopped! I can count on one hand the number of times I have been away from her, since she was born. The longest was for five days, that one time when I went on a trek. And here I am, almost a year since losing her, wondering how I have managed to get to this point in space and time. How have I managed to exist without seeing, hearing, or holding her all these months?

When I last put out a post here (sometime last year) I had plans of writing a follow-up piece within a couple of months. Writing, which has been my primary crutch in life, however has ceased to behave. All I could manage most days of the week were a few lines in my journal – lines that spelt out my grief, because as always pinning those feelings down on a page made them scream less audibly in my head. Lines too primal and visceral to share. Lines I would write down and then slam the door shut on. I did try working on pieces I had started earlier, like my series on a road trip to the Himalayan foothills with my friend and our families. But it was pointless to try and write about anything, because everything else felt inconsequential in the face of my grief, how much I missed her, and the general impossible-ness of being. And writing about my baby is still excruciatingly painful.

I then changed my approach and decided that instead of writing anything, I would just organize my notes from the last few years. I had started writing these notes at the start of her treatment to keep track of the hundreds of symptoms, procedures and medicines, but within a few weeks they had morphed into something more. They began to chart the emotional journey along with the medical. But those notes, about feelings of fear and trauma, and that terrible, terrible hope that saw us through the last few years, are a time machine I don’t need… I can’t use at present. I am still unable to look back at most of the last two to three years without feeling terror.

About five to six years ago, I had shared these lines on my Instagram page – part of a longer poem. This last year, I truly understood their meaning.

A grief so deep, I deal with it in instalments…

These are chapters I don’t have the courage to open the door on again at present, so I am not going to try and tell those stories yet. I know I will write about this journey in its entirety at some point, because that is how I process life and heal. But now is not yet that time. However, I want to keep this page alive. I want to keep my writing alive. So, for now an update to keep things ticking. An update, and a small story that will let you know who Sakshi was.

Update

Suresh and I have managed to get through in manners similar and dissimilar. We both are always happy to talk about her with anyone who is willing and comfortable enough to talk about a dead child. Not many are. We are fortunate to have family and a close set of friends who are happy to, and more importantly, want to talk to us about her. We try and do what little good we can in this world in Sakshi’s name. He has buried himself in work and occasionally talks to me… about Sakshi, about this great sorrowful missing that is a part of us now. I have dived deep into meditation, Reiki, NDEs (near death experience), and the Bhagwat Gita to find the balance and solace that lets me get through each day. I also found a wonderful clinical hypnotherapist who helps me live with my grief and interpret my STEs (spiritually transformative experiences). I still occasionally have sessions with her. Some think me weird, but all let me be.

My mother (one of the most important persons in my daughter’s life) in the meantime attended classes on candle making and has now started selling 100% natural soy candles with essential oils to close family and friends. She named it after her beloved granddaughter – Sakshi’s Joy, because that is what Sakshi was primarily about. So much joy and zest for life.

Sakshi’s Joy - an ammamma’s ode of love

This coming October, when Sakshi turns 18, we hope to make the candles available for online purchase. That is the plan. All the profits from the sale of these candles will go towards helping impoverished paediatric cancer patients. We also have plans to start a foundation that will help manage these profits and other funds we may raise – but this is a long-term plan, as we are still trying (very slowly, I admit) to figure our way around the legalities of starting a foundation. 

Sakshi

Sakshi, wearing her ‘dream’ prom gown and a scarf to cover her bald patches caused by the brain radiation.

This is a photograph we took of her before her junior prom. She was crowned the prom queen by the way. We dropped her and her bestie Anouschka to the prom, and drove back home, nervous, because this was the first time, we had left her alone without either parent since the cancer was diagnosed. I was stressed. Sakshi had been having at least one seizure every three weeks for the last couple of months and suffered intense headaches lasting hours, followed by terrible vomiting on a daily basis. But she had wanted this evening to be as normal as possible. After an hour or so, we called her and she answered, her voice brimming with excitement. I asked her, “Baby, I hope you are having fun…” I could hear the loud music and the general cacophony of a hall full of young teens in the background. She screamed, “I am having a blast,” into the phone. “I hope you are not overdoing it and are taking rest!” And she replied, “Hell no! I have been dancing for the last hour without a break.”

At the appointed time we drove back, picked the two girls amidst a whirl of byes and excitement. She showed off her prom queen sash. I was secretly wondering whether her batch mates had given her the title out of kindness. Just then I hear her chime up, “Prom queen! Me! I think they gave it to me because I have cancer. But I don’t care! I am going to milk the cancer card for all it is worth.” And then she and her friend cracked up with laughter. But we could see she was tiring.

That was the last ‘kind-of-normal’ day she had. Later her radiologist nurse said to me, “I think she kept herself together till the prom through sheer willpower.” Over the next three months, she lost most of her vision, hearing, and her ability to stand or walk on her own. Unbeknownst to us, despite 14 rounds of one of the most aggressive chemo treatments out there, an 8-hour long HIPEC surgery, brain and abdominal radiation, the cancer had already spread to her spinal fluid.

The day after the prom, she was back again in the hospital, and after that was more there than at home, undergoing more blood and plasma transfusions than I could count, brain surgery, spinal taps, a final trial chemo, and eventually cardiac arrest, coma, and her passing into the light. She was sassy and witty, imitating accents and making people laugh till the very end. Cancer be damned.

On the night of the prom, after dropping her friend back home, we reached home. As soon as we got in, she ran into the nearest bathroom and threw up. Afterwards she looked at me and said, “Totally worth it!”

That was Sakshi.

That is the spirit, we try to live in, and with. This journey, unique to a bereaved parent, is one that singes the flesh off one’s bones, and just when I think I am all cried out, I find new reserves of tears on most days. I also find deeper reserves of strength. My only hope – that when we are done, and finally meet up with Sakshi again, we can also say, “Totally worth it!”