The extra candle on the cake

Our littlest turned all of three years old this week. Time surely flies….How could Zoey’s Hari be three already ? Wasn’t he just a baby yesterday. How could his older brother be turning five later this year. Wasn’t he just sleeping on his darling sister’s lap as a new-born? Yes these boys are growing and with each additional day, month and year we seem to inch farther away from a world that knew and breathed Zoey. Sigh…. that’s the physical nature of our existence and there isn’t much that can be done to change it.
That being said, our Hari did turn three and we are thankful to have celebrated it with a few of his and brother’s friends. It was a small celebration at one of my Zoey’s favorite places ( The little gym). Birthdays (or any kind of celebration) always bring out bittersweet emotions in me. I get thrown back to the days of meticulously planning the day for my girl. I’m reminded of the fact that I could only have five birthdays with her. Five not sixty or more. Not to mention the guilt of enjoying something without her. Yes these emotions aren’t pretty or sharing-worthy, and most times I do a good job of concealing them. So all along, today I was busy with preparations. I distracted myself as far as I could. Her dad and I spoke briefly about her obvious absence. I even chatted with a friend about not having Zoey at the party today. She tried her best to comfort me and said Zoey will find a way to get through to us …..

The boys had a blast at the party. When it was time to cut the cake the organizer asked me to click a picture before she could put candles on it. Then she asked me if I would like four candles on the cake instead of just three. (3 for Hari and one of good luck). Even though I was not familiar with this custom, I found myself saying “Absolutely”. I knew instantly it was my Zoey. That extra candle was for my Zoey, who was there for her little brother’s birthday. Zoey is that good-luck candle in my life.
I’m sure that extra candle went unnoticed in the chitter-chatter and laughter of the party. Also, to a third person all of this sounds overly sentimental and made-up. But not to a bereaved parent missing a piece of their heart and soul. That candle was just the balm my heart needed today. It connected with me and my baby girl.

Love you my darling Zoey, as always to the moon and back.
Your loving mom

The missing name

On the outside we appear like that textbook family of four. A dad, a mom and two active toddlers. We do all activities any normal family would do. We wake up each morning, have breakfast, go to work , cook and clean, feed our kids , send them to school , go to the park when the weather is good, we shop, and resolve tantrums like any other regular family. To an outsider we probably look content and happy. They aren’t aware of our first-born child, who has turned into this beautiful memory residing only in our hearts. They don’t see the gut-wrenching heart-ache and grief that Zoey’s dad and I experience most days. They don’t see the tears hidden behind those smiles. Mostly they don’t see the struggle. The struggle about when to include our dear Zoey and when to leave her out. Is it OK to bring up your deceased child in a conversation with a neighbor you hardly know ? Is it OK to tell someone that I’ve done this before and I know exactly what it means to have a little girl. This is one of the reasons I cringe at the thought of meeting  people that don’t know Zoey and making new friends. I hesitate to reach out. But we live in a society and I have two little boys. I can’t live on an island …. I so wish I could.

So this weekend we got invited to a birthday party in our neighborhood. We have met this family a couple of times, mostly outside playing in the park. We don’t know each other very well and like us, they are also new to the community. So when the invitation came, I felt nice that this sweet neighbor thought to include us in her child’s celebration. I asked Anay if he wanted to go and he seemed excited. So we bought a birthday gift and I asked Anay to write in the birthday card. He wrote his name and his brother’s name, and looked at me and asked “Can I write Zoey’s name ?” My brain just froze. I didn’t know what to tell him. Karthik and I have always talked about Zoey very openly with the boys. The boys include her in everything. They include her in the stories that they spin and narrate. They include her in the pictures they draw. Zoey’s name is always included in cards and gifts sent to our family. So naturally according to my little boy’s logic , why wouldn’t we include her name on this birthday card ? I just wish we adults thought and acted with equal innocence. I didn’t think through, and I completely regret what I did next. I told him he can write Zoey’s name on his favorite Doodle-pro instead of this card. He looked confused but didn’t question my decision, thankfully. We were getting late and so we left for the party.

Later after returning home, I thought about what happened. I felt so guilty ……. If my boy wanted to include his sister in the card why did I stop him. What was I thinking? What was I trying to circumvent ? Yes I didn’t want to get into an awkward conversation about a departed child at a happy kids party. I didn’t want to face that look of dread when they hear about what happened to my Zoey for the very first time. But frankly they probably wouldn’t even notice her name ….I felt miserable for betraying my only baby girl.

I guess I will handle it better next time. I’m learning as well. I’m learning to find a balance in-spite of this struggle. However in the future, if Anay or Hari want to include their lovely Akka in anything I’m not going to stop them. I just hope Anay would continue to include her and this one incident wouldn’t stop him. I sure hope not.

Zoey, I’m sorry my baby girl. For the first time I felt I betrayed you. I’m sorry …. it’s been over 4 years since you left , but your mom is still learning to survive in this world, without you.
Love you to moon and back (as always)

Family of five

The Doodle

This past weekend we took the kids to visit the Crayola Experience located in Easton, PA. This is one indoor play space for kids where the magic of crayons and color truly comes to life. There are tons of fun activities for kids, to enjoy, learn and explore their creativity. So naturally our boys had a blast. We were about to leave, when I realized we hadn’t taken them to a zone called “Doodle in the dark”. We were getting late but decided to check it out anyway. And I’m so glad we did.

This play zone is dark room that has large doodle boards that make your art glow in the dark. It also has an interactive floor that responds to your motions with a series fun and colorful games. The boys instantly took a liking to this floor and began dancing on it with the other kids. After a while Anay noticed one of the huge doodle boards and began writing on it. This is what he wrote :

My three kids

Seeing Zoey’s name out there I realized this was my first trip to Crayola Experience. We never got a chance to bring Zoey, so naturally I had no memories of my girl here. However Zoey did get to visit as part of her summer school field trip. I remember her coming home with a coloring book and set of special crayons that was given to her as part of the trip. So as I looked at her name on that doodle board I realized my beautiful baby girl was making her presence felt again.
These days ‘Zoey Akka’ has become an essential part of Anay’s vocabulary. He will include her in almost all his stories. Sometimes she is one of the bear children in his narration of Goldilocks and the three bears. Sometimes she becomes Daisy Duck, or she is the naughty villain called Luna Girl from his recent favorite show: The PJ masks. (Well he includes his parents and his brother as well). So to see her name written out there with my boy’s names was enough proof of the fact that she is always around him. It was like she came with us and enjoyed all those activities with her brothers. It also reinforced the fact that I will always be a mom to three beautiful kids. Three and not two. And finally for me, this was also a testament to the fact that love never dies. Zoey’s love just like her eternal soul, will live forever. It will continue to blossom in the hearts of her loved ones.
Thank you Zoey. I feel so blessed to be your mom.
Love you forever.

Zoey at a restaurant eating her favorite buttered pasta

The Monologue

This morning while I was getting these boys ready for school I overheard my 4-year-old’s monologue (with himself). He does that often and it will typically be about something completely random like his Mickey Mouse or the PJ masks or he will pretend he is reading from one of his favorite books. It’s a form of pretend-play, it’s adorable and I typically listen in to amuse myself. If I interrupt he stops and gives me that “Come on Amma” look. So this morning when I heard him talk to himself, I didn’t give it any attention. It went on for a few minutes but as I was loading his brother into the car it got interesting. Details penned below:

Where is she? Is she in the washing machine ? No
Is she in the kitchen ? No
Is she in play area? No
Is she in this car going to school ?No
Is she in the swami room. Where is that cute little girl ? ( yes he actually said cute little girl)

By now my curiosity had piqued. I was in front of him buckling him in his car seat and I couldn’t resist, I asked:
“Where is who Anay ?”. He answered “Zoey Akka ….Amma.”

I responded “Where do you think she is ?”

He answered: “She is that picture hanging on the wall. She is in the swami (prayer) room upstairs. She is with Appa, Amma, Anay and Hari in the new house ( our current residence. These kids still refer to it as the new house). And she is also in the that other house that I was born in … that Appa took me to show ….” ( We had taken a drive to our Zoey’s hood last weekend. Anay’s Appa insisted we showed the boys our Zoey’s house ( from outside) and the hospital at which these two were born ).

As he finished telling me ALL that I was in tears but I was smiling ear to ear. My darling boy knew where his Akka was. He was smiling back looking straight into my tear-filled eyes … like he knew everything. And then in a second he got distracted and said with a naughty smile “Amma no school today ….” .

Just like that, out of the blue, he asked those questions. His simple and innocent mind answered with the truth. The truth that Zoey Akka is everywhere her loved ones are…. that Zoey resides in our hearts and continues to be such a strong driving force in our lives. I have no doubt his sister was right there listening in as well….I have no doubt she is guiding him in her own way. Oh how I wish I could see her and feel her just like these kids do. How I wish I had the purity of thought these kids have. How I wish I never had to grow up ….How I wish she never left……..

Love you Zoey….Miss you Zoey ….
As always your mom.

Anay and Hari

Her brothers


Carefree Zoey

Carefree Zoey

A heartfelt letter to Zoey’s Soccer-Ball

My darling, my dear son,

From the moment we came to know of your impending arrival, way back in March of 2012, your dad and I were cautiously excited. There were a lot of reasons for that feeling of caution. See we had to go through a lot of hardships to actually have your Zoey Akka ( Akka means big sister ) join our family. I spent four months on complete hospitalized bed rest to make sure your Akka was growing fine and wouldn’t arrive too early. We were blessed with her after three heartbreaking miscarriages and a ton of prayer and hope. So naturally, given this history, we were worried about your health as you grew inside of me. There was another important reason as well. We didn’t want to upset your Akka in case things didn’t work out the way we planned. (How naive we were ? We actually thought our plans mattered. ) See Zoey Akka was our only child back then, and she was absolutely our princess. So your dad and I decided to wait and see where we were headed, before we shared your good news with her.

I still remember that evening sometime in May when we finally told her. She was almost 5 years old by then. I remember her sitting on your Appa’s lap when we told her about her little playmate growing in my belly. At first she was surprised. She couldn’t understand and probably felt a bit threatened. But once your dad and I told her that she will always remain our number-one girl, our little princess, I immediately felt her warming up to the idea of you. Even then, for a 5-year-old who had been pampered with our complete, undivided attention and love, it must have been a little hard to comprehend.

As the days progressed I could feel her getting excited about you. She would ask me how you were growing inside. By her 5th birthday she had already picked a pet-name for you. You were named Candy-Cane because of her love of candies (I guess ). It was June already and her 5 year well-visit with her pediatrician went off perfectly. No red flags of the mayhem that would arrive soon. However I did notice she was becoming increasingly clingy and threw tantrums for no reason. Very unlike of her. Her pediatrician ruled it off as anxiety caused by the thought of sharing our love with you. We all know how wrong she was. But I don’t blame her, your Zoey Akka was like that. She tricked us all till the end. My baby girl, your brave Akka.

I remember clearly that horrible Labour day weekend, when we were informed of the terminal nature of her cancer. I was sitting next to her on that hospital bed and when her nurse asked her if she had picked any names for you, and she proudly replied ” Candy-Cane Karthik Ganesh” . Everyone burst out laughing after that announcement. It was only later she named you “Soccer-ball “. I guess it was because Candy-Cane reminded her of chocolates and sweets that she couldn’t consume too many of, after her diagnosis. And of course the name stuck because you were growing like a cute little ball inside of me.

The 12 weeks that followed her diagnosis were the most precious time of my life. It was the only time I had you and your Akka physically with me almost every minute of the day. You were still inside but I could feel your strong kicks and your frequent hiccups. You were very real to me by then. Your Akka was always with me. I made sure she got 100 percent of my time. She loved coming to my ultra-sound appointments since she could actually see you move inside. However the only time she wasn’t with me was during her radiation sessions. That was the only time I had to choose you over her. See pregnant women aren’t allowed inside the room containing radiation equipment etc, due to the risk of exposure to the unborn child. I wasn’t happy about this, but your Zoey Akka was just OK. She had her amazing Dada, her grandparents, and her Asha Patti accompany her everyday. I’d stay back home, keeping her favorite snack ready for when she returned. That was also the only time I got be alone with you. I’d talk to you and pray to you to be healthy and stay inside of me in-spite of all excitement outside. And you listened so obediently. You kept your Akka’s word and arrived exactly the day after after Halloween. I think you and Akka had been planning this all along. (Had you waited till your due date you wouldn’t have met your Akka ).

Zoey Akka was such an amazing big sister to you. She loved you so very much. These days, I find myself watching the videos of you two repeatedly. The video of her promise to you that when you grow up, you both would sing, dance and play all you want. The video of her claiming her love for you. I have memories of her running up the stairs with me (with that tumor growing in her brain), just to be able to change your poopy diaper. Oh yes by then she was also calling you “poopy-head”.

Yes your Zoey Akka was just one of a kind. But you , my darling, are no different. You knew where my priorities were back then, and you patiently waited for your turn while your dad and I were tending to your Akka’s needs. I didn’t have to worry about you as your Thatha, Patti, Ajja , Doma ( grandparents ), your Chikki and Chikaapa ( aunt and uncle) were all taking care of you.

After Zoey left on on that dreadful Sunday in November, I remember coming back home to you. It’s probably the toughest thing I’ve had to do in my entire life. While I wished my heart stopped beating and I just sank in a never-ending hole…. while I wished I didn’t have to wake up from sleep ever……you forced me to get my act together. You were right there, less than a month old, waiting to be held by your mom. You taught me how to love unconditionally all over again. After your Akka left, our house had this deafening silence, only to be pierced by your loud infant cries. And at that miserable time, all of Zoey’s surviving loved ones needed to hear that welcome sound. It was absolute music to our ears. I cannot thank you enough for choosing your dad and I to be your parents. And I cannot thank you enough for timely arrival into our family. Your Akka handed her tired and battered parents to you before she left. And you did an awesome job to insure they survived.

The reason I decided to pen all this is two-fold.

I don’t know if I’ll be around forever to keep talking to you about Akka. ( And I’m not sure if that’s the right thing for you anyway). I needed you to know of the bond you and Akka shared even if it was for extremely short period of time. That bond , that love will always remain priceless for me.
Also when I asked you the other day, about your best friend, you answered without an iota of doubt, it was your Hari. I was expecting some kid’s name from school….. nevertheless I was thrilled to hear that. You are all of four years old and you and Hari share such a special bond. I have to admit, for a moment, I felt cheated of the time you should have had with your Zoey Akka. Then I reminded myself……your Hari is actually Zoey’s Hari. He is here to be that playmate and partner-in-crime she once promised you. She did keep that promise ….. And for that I shall forever be grateful.

Lastly I need you and your little brother to know that your dad and I try our best to be that awesome parent you both deserve. While a huge part our heart is forever gone, you both have managed to carve your way in there. We find ourselves smiling, laughing and feeling joy all over again, seeing you both play and grow in front of our eyes. I don’t know what’s coming our way in the future. So I won’t mention the word hope, because it doesn’t exist for your dad and I ( especially after losing your sister). For me hope is the expectation that tomorrow will be better and that it will somehow bring the outcome you desire. However Faith is different. Faith is the acceptance that whatever is in store tomorrow will be just FINE….be it the favorable or unfavorable. So yes I have faith in us. I have faith in our love for each other. I have faith in you. I love you my darling son, to the moon and back as always.

Your loving Amma.

Zoey and her soccer-ball on his birth day

Zoey and her soccer-ball on the morning of his birth

Zoey and soccer-ball a week before she passed away

Zoey and her soccer-ball a week before she passed away

Zoey, soccer ball and Zoey's dada

Zoey, soccer ball and Zoey’s dada

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Hospice

Hospice

If you lookup the meaning of this word the following would probably show up:

A program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care.

See the words terminally ill and a full-of-life 5-year-old child don’t go hand-in-hand. But unfortunately in the pediatric cancer community they do. And it is a fairly common occurrence too. Did you know that in the US, cancer is the number one cause of death by disease among children. Per the American Cancer Society about 12 % of the kids diagnosed with cancer do not make it to the five-year survival mark. So the word hospice is no stranger to this cruel world of pediatric cancer.

Today I’d like to focus on a this group of beautiful souls that help our children die peacefully. In my opinion they are doing Gods’s work on earth and are completely under appreciated for what they do. I’m talking about Zoey’s hospice nurses who helped us with her palliative care.

Zoey had that final MRI about 13 days before she passed away. We were completely shocked at the results, because at the time, my brave daughter was still able to walk, see, talk and pretty much eat anything she wanted. How could the tumor have grown so much without affecting her life drastically.

While I was total mess, my wise and practical husband knew what to do next. He called hospice the very next day and had them visit us. We had a very compassionate social worker and pediatric nurse come to our door step. I was so livid at Zoey’s dad. I couldn’t understand how he could give up on his child. I refused to even meet them the first time around. Zoey was still doing well given the circumstances and for me hospice meant the end. It meant that I had to actually talk to people about her dying and I wasn’t remotely prepared for that. Little did I know then that getting hospice involved early doesn’t mean you are giving up on your child. It means you are looking to make your princess the most comfortable you can, till the very end. See my husband understood that. He wouldn’t let his princess suffer even a little bit. (He was very protective of her).
Zoey’s hospice nurses were absolutely amazing. They visited Zoey everyday. They taught Zoey’s dad everything there is about medications to tackle the various symptoms that could arise. They told him about seizure management, pain management, etc. Luckily Zoey didn’t need much of these. She still had a few good days with us enjoying all of her favorite things with all of her favorite people ( her parents, grandparents, aunt, uncle and newborn baby brother). However during that last one week of her life, her health declined rapidly. Everyday she would be weaker than the prior. Her breaths would get slower. She seemed lethargic and slept quite a bit. Also she was in lot of pain and needed medication to manage it. Zoey’s dad would call the hospice nurse multiple times a day to get dosage instructions and any other help he needed. He was with her 24/7. I was so scared all the time. I was scared that she would go without our knowledge, maybe in her sleep. I still remember asking Karthik to call the hospice nurse in the middle of the night after we felt her breaths were very slow. Zoey’s nurse was at her bedside within an hour. Holding Zoey’s hand, talking to her and telling us Zoey is doing ok ( given the circumstances) . I remember being so  angry. I was angry that Zoey wasn’t even given the typical honeymoon period after radiation … that is a few months of normal life that most DIPG patients get. See we only got 12 weeks post diagnosis … so I was angry at everything and everyone. But my anger or my love for the child didnt matter at the time. It was about her and her comfort alone. And  her dad had the foresight to see it way before I could even think about it. After a few days of managing her at home, her dad and I decided to move Zoey to the hospital versus keeping her at home. We felt she needed medical help to be comfortable and not be in pain….. and also selfishly we wanted to be alone with her. See it had always been the three of us….Zoey , her Dada and I. At home we had other priorities that could take our time away from our girl ( like her new-born baby brother) and we felt dedicating all of our time to her would be the best. (Her baby brother was in good hands …..being cared for by his loving paternal and maternal grandparents, uncle and aunt.)

So we admitted her to the hospital on that Friday morning. She was still alert , talking and eating. She complained of pain so the nurses upped her pain medication. At home Zoey always slept in between her dad and I. So her nurses arranged for two beds to be placed side by side. That way her dad and I could be on either side of her ( just like home). They were wonderful. That evening she woke up from sleep and demanded ice cream for dinner. Her nurse rushed out and got her three cups of her favorite flavors. And my baby girl , my beautiful baby girl ate every drop of it. She had her grandparents , aunt and uncle visit her that evening with whom she managed to chat.

Later that night she seemed a bit agitated and had some difficulty breathing. Her nurse gave her some Ativan, after which she slept peacefully on me.
Before sleeping on me, Zoey asked me something that I will be etched in my soul forever. She asked me if I’d meet her in heaven. I cannot describe the feeling I felt. All I could mouth at the time was I’ll be there as soon as I can. She smiled and slept with her little Krishna idol next to her. She never woke up again. Neither her dad nor I had ever spoken to her about heaven. She definitely knew she was going there. I wonder who was speaking to her in her sleep and preparing her for the inevitable ? There is so much we don’t know about this life and its journey and the afterlife.

Though Zoey went into coma that night her heart kept beating strongly for nearly 36 more hours. Her nurses were beyond amazing. They kept checking on us every hour for the next day and 1/2. One of them even sat down with me told me something every parent would want to hear. She said in her 25 years of being a oncology nurse, she had never seen a child like Zoey who managed to be so alert, expressive and full of life till the very end. The pride I felt for my child hearing those words is just indescribable. In my opinion she did defeat DIPG, just not in the way we would want it to be.

They encouraged us to speak to Zoey because hearing is the last thing to go. So we sat there holding our child’s hand and kept telling her we loved her repeatedly. Her nurse even helped me give her a final bath the next day. She brought a nice tub of warm water and towels. This memory is something I cherish …. yes my heart was breaking into a million pieces and all I could think of Zoey enjoying her warm sponge bath. ( Zoey loved playing in water).
Even now over 4 years later, I remember every minute of Zoey’s last few days…… and I can’t thank Zoey’s nurses enough for everything they did for her and us at the time.
They definitely are doing God’s work on earth. And they do it day after day, with a constant smile on their face. Isn’t that amazing ?

This post got me thinking. Why didn’t I share these memories of Zoey’s last few days earlier … why now after 4 years ….. I guess my mind may have blocked it because a part of me only wanted to hold on to the happy memories of my girl. But then I realized I don’t want forget anything about her. Be it the good, the bad or the ugly. Everything about her will always be beautiful. Her first cry as soon as she entered this world, or her loud cry in pain when that tumor was ravaging her brain, her first dance as a toddler or her last dance on her bed singing “bring down you boo-boo”. Yes absolutely everything about her was and continues to be beautiful to my eyes.

I love you my first-born baby girl. To the moon and back (as always).

The last time she slept on me.

The last time she slept on me.

Shall we dance

Shall we dance

“Shall we dance Amma?” I get asked very politely by my littlest. He is just over 2.5 years and is an extremely cute dancer. Any music that plays on TV or anywhere else, he starts dancing. Those deep eyes look at you expectantly, and those tiny hands reach out to you forcing you to instantly get up and move with him. So I get up, hold his hands and we both do a silly dance to the Mickey Mouse Club House theme song. My older boy is giggling away, amused by his little brother and mom dancing to his favorite show. ( He too loves to dance, but he really needs to be in the mood and also needs some good beats). The younger one dances to anything. As we finish our little number, I can’t help but reflect on the past when I used to dance with my baby girl.

My baby girl who loved dancing. Any music playing anywhere, that bold child would get up and dance. Very similar to my littlest boy. I remember that one-year-old who had just learned to walk, moving her tiny self to nursery rhymes. I remember her falling down and getting up saying in a baby voice “Zoey fell down”. I remember that 3-year-old girl dancing to live music at a random restaurant, while we were vacationing in SC. I see her doing ballet to Swan-Lake during her Pre-K graduation ceremony in her beautiful pink tutu. That night not only did she dance, she participated in a skit, and told the audience she wanted to become a paleontologist-ballerina. Watching her on stage that night I thought, I couldn’t be prouder ….. how she proved me wrong ! She not only danced on stage, but danced her way through cancer. She’d dance to the song “Hey Krishna ” every single morning before heading out for her radiation session. And she was quirky that way. She did ballet moves to “Mahishasura Mardini”. People who know this song definitely know it’s nothing like ballet music. I watch that video of her and all I can say “Only my Zoey would think of something like that 😃”. In the last week of her life she couldn’t stand by herself so she’d sit up in bed and insist on moving her frail body with a huge smile on her face. Oh boy the spirit she had. As I watch her videos from that last week and I wonder how she did it. Where was she getting all that energy ? Her brain was shutting down her body slowly ….but I guess that cancer couldn’t touch her heart and undying spirit. Oh I miss that spirit. That force , that life ….my life . My Zoey. I miss her. Period.

So now you know how dancing with my child was a big part of my life. Looks like the universe has handed me another opportunity to do the same. These days when I get asked by my littlest, I jump in without thinking twice. Because if I am lucky he will soon grow out of this phase, and not want to dance with his mom 😃. Yes it isn’t like dancing with my Zoey. How can it be ? There can only be one and only one Zoey in my life. She is my number one girl forever. She is irreplaceable. However dancing with my boys is still special. It will be something I cherish in the years to come 🙂

Dancing Zoey

Dancing Zoey

Zoey forcing me to dance 😃

Zoey forcing me to dance 😃

Hari and I dancing in Disney

Hari and I dancing in Disney

4 years

Letter from Zoey’s dad to all her loved ones, on the 4th anniversary of her passing.

November 25th marked four years since Zoey’s passing and we have now spent over 70% of her life without her, and yet the separation seems so insignificant compared to the enormity of the five and a half years we got with her. While that amount of time may seem like a small number, we got a lifetime’s worth of memories from them. What else can one ask for? 5.5 years with the love of my life, a boatload of memories, a vision of her blowing fish kisses at me when I close my eyes and when my head is quiet enough, her voice in my ear saying “love you dada”…can’t ask God for much more.

Suman and I leave town each year on Zoey’s anniversary just because we know we’d sit around moping if we stayed at home. Arguably there’s nothing markedly different about the day besides being symbolic on the calendar…every single day since that day four years ago has been a day without her physical presence. This year Suman and I took the boys to Disney World. Zoey was four when we brought her here and Anay is the exact same age. Two high-energy boys are definitely very different companions than a petite well-behaved girl. Anay is Mickey obsessed and spent the trip convincing his father that the best way to get him to behave himself was to buy him Mickey-faced toys. Hari on the hand has a simple philosophy when it comes to these things, if you buy something for my brother you better do the same for me as well or else everyone will both hear and feel my presence.

One expects Disney World to be filled with excited kids and their parents trying to soak in all that as Disney’s aptly puts it, the “happiest place on earth” has to offer. We did see tons of those folks. There was also this other set of folks that I noticed on this trip that quite frankly made this trip more real for me. Kids being wheeled around with chemotherapy ports sticking out of their bodies for what may have been their last “fun” trip prior to their final journey. A family wheeling around a very tired looking child on a wheelchair wearing T-shirts that said “Make a Wish Foundation – Illinois”, trying to smile and look energized while understanding that the foundation only supported the final wishes of terminal kids. Other families with kids that had seemingly severe physical and mental disabilities completely focused on acting normal with their kids while looking around at other kids and wishing their kids had a different kind of “normal”. A man, maybe a cleric, wearing a T-shirt that said, “God is my boss”. Seeing these folks just reinforced for me how a place like Disney World is no different from any other place in this world where the dualities of life (happiness-sorrow, life-death, etc.) stare us in the face…whether we choose to see them or not rests with us.

The last time we went to Disney, I had a beautiful wife and daughter, a thriving career and no financial worries…materialism and selfishness were at their finest. Childhood cancer was something that happened to someone else’s family. My relationship with God was transactional…since things were going pretty good…God was good. Praying to God was invariably about asking for something. Does this sound familiar? Isn’t this how most of us live our lives? Is faith in God based on how well we feel we are being treated and how well life is going, or is it something deeper?

Here’s how I see faith now…faith equals acceptance. Accepting that the dualities of life are a blessing is faith. Accepting that I always get what I deserve as against what I desire is faith. Accepting that what I get is the right thing for me every single time is faith. Accepting that heaven and hell are states or mind and that heaven rests within me and in my state of mind is faith. Acceptance that I can choose to be satisfied with what I have without constantly wanting something more is faith. Accepting that while Zoey’s time with us was shorter than anticipated, her death was much of a blessing as her life is faith. Accepting that God is always just irrespective of what is thrown my way is faith. For all the T-shirts with messages that I saw at Disney, the one that stood out for me said this – “Thankful & Grateful”.

Thank you for everything you’ve done for Suman and me over these last four years.
Zoey’s dad.

Princess Zoey at Disney in 2011

Princess Zoey at Disney in 2011

How to support a greiving friend after child loss

On November 25th 2012, I was forced into this club that no parent wants to join. Yes it’s been almost 4 years since we said goodbye to my Zoey. These years have seen so much. So many emotions, I don’t know where to begin. Anger, denial, gut-wrenching grief, desperation, acceptance, joy, peace and so much love. However living with this grief has also been extremely lonely and isolating. It’s like the entire world on the outside has moved on leaving you all alone, stuck in the time when your child was alive.
It’s partly because of the fact that we don’t think about child loss until its us or someone close to us that experiences it. See children dying too soon isn’t the norm we are used to. We accept death when it comes to our elders. But our children, No. We don’t want to go there because it’s too sad and let’s face it, it’s too scary. Children are supposed to outlive parents and when something like this happens it shocks our core and leaves us helpless. Over these years I’ve experienced that most people are clueless and don’t know what to say or how to comfort a bereaved parent. So today I’m penning some heartfelt advice to the friends of a bereaved mother. (I say bereaved mother versus bereaved parent because dads grieve differently) I guess this advice may sound unsolicited but please bear with me.

Don’t disappear

Yes your friend has lost her child and is in no state to call or talk about it. She needs time. And there is no fixed amount of time. Everyone grieves differently. Some like to go into their shell while others want to be vocal about their feelings.
So what happens next? You try to visit, you call a few times but she doesn’t respond. You are sincere and you want to help. You love her. You text or call again, and she still doesn’t respond. A long time passes and you get busy with your life and responsibilities. It’s not that you forget her. You have her best interest in your heart and you really think about her everyday, but you hesitate to reach out……And just like that she loses a good friend she once had.

However if that friendship mattered to you, and if you want to continue to be in her life and vice-versa, you will pick that phone and call and keep calling. Yes she may not answer it immediately. But the very fact that you called will help her immensely. The very fact that you took a few minutes out of your hectic life to call and leave a voicemail will make her feel cared for. And one day she will be ready to speak to you, and include you back in her life. May take several days, months or years …. But trust me it will happen.

Talk about her child

Most people fear that bringing up the topic of the dead child, may trigger unnecessary tears and grief. Let me tell you, nothing you say or do will remind her of her child. Because she is always , ALWAYS, thinking of the one she lost. It’s like second nature to her. It’s like breathing.
Your mentioning her child’s name, will let her know that her baby isn’t forgotten. See as a bereaved parent that is one of fears we have……That our child will be forgotten over time.

If you have kids that were friends with her child, talk about them as well. She will feel good that you are including her in your life and it’s happenings. If you happen to remember the child’s birthday or “death” day, do call her to let her know. I can assure you, she would love that phone call.

Don’t wish her on her birthday
Birthdays and anniversaries don’t mean much to her anymore. Birthdays are a constant reminder of how much time has gone by since her child died. After seeing her child die, her “birth” day isn’t special. It’s just another day that she has to tide through. Also birthdays typically bring on a guilt that while she survived another year, her baby died way too soon.

Instead of wishing her, you could just let her know that you are thinking of her. Also if you happen to notice she hasn’t called you on your birthday, it’s basically due to the same reason. You may notice that she still celebrates the birthdays of her living children. However inside, her heart always cringes at the thought of a celebration.

Let her grieve openly

Sadness makes us feel uncomfortable and we don’t know what to say or do when someone breaks down in front of us. We want to help but somehow society has instilled in us that tears are not meant for the public eye. No tears aren’t bad. Sometimes all a bereaved parent wants to do is sit down and cry. (Because as a parent you can’t let your guard down in front of your other living kids. You need to be strong and superhuman for them).
So if your friend wants to just let go of her tears in your presence, just let her. Let her cry and grieve openly. Be there for her and don’t try to say something to “fix” it for her. Because absolutely nothing in the world can bring her child back. That’s the reality she has to deal with every second of the day. And remember, she is doing it with a smile on her face most of the time. So if she wants to grieve openly , just let her.

Finally …..Just be there
I cannot emphasize on this enough. The friends and loved ones I remember and appreciate the most in my life now are the ones that continued to be there through these post-Zoey years.
I get it. It’s hard to understand when your friend wants to be alone and when she craves company. The only way to know is to ask. “Do you want me to come over ? Why don’t you join me for coffee?”.
I also get it, you may have your own grief to deal with. You may be grieving the child’s death too, or the child’s death may remind you of the vulnerability of others in your life, particularly of your own children. However I request you to not let it block you from being there for her. In conclusion, reach out – show her that you care.

Thank you for taking the time to read this through …..
Sincerely,
A bereaved mom.
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Krishna Janmasthami 2016

Today is Krishna Janmasthami. It is an annual celebration of the birth of the Hindu deity “Krishna”. It is typically celebrated by fasting, worshipping Krishna and staying up until midnight to offer prayers, sweets , flowers and fruits at a special time when he is believed to have been born. Growing up in India, I looked forward to this festival because mom would make various mouth-watering delicacies all day. We’d be forbidden to eat any of it until all the prayers were offered at night. Then we would gorge to our heart’s content.

Last year I was in Bangalore for this festival. I remember dressing up these boys of mine in their little Krishna outfits. They gladly wore them and even allowed for some pictures to be taken.

Janmasthami 2015

Janmasthami 2015

That was last year. See this year these boys have turned into extremely strong-willed toddlers, whose first response to anything I suggest is a resounding and final “NO”. None of my skills in persuasion, blackmailing with chocolate, or threatening them with adverse consequences seemed to have helped. The older boy even said it was OK if he doesn’t get chocolate today…..So I guess I gave up. I made peace with them running around in some super-hero t-shirt of their choice instead. 😊

On this day, it’s hard not to think of my Zoey’s undying love and devotion for her little Krishna. So this year, I decided to prepare a few delicacies that I made in the Zoey-era of my life. I made the traditional aval-payasam (made with milk, clarified butter, rice, sugar and nuts) , idli (steamed rice pancakes), and some chakuli (fried savory snack made with rice, lentils and butter). No I didn’t do this alone. I couldn’t especially with these two toddlers around. My kid’s nanny helped me immensely. (And yes I feel blessed to have that kind of support in my life).

Making chakuli, instantly took me back to 2012. That was the last time it was prepared in my residence. It has taken me four years to get out of my grief and make this particular snack for these boys. It used to be Zoey’s favorite. I remember so clearly making it with Zoey and Zoey’s Domi (grandma) in August 2012. We were so oblivious of the storm that was going to come and turn our lives upside down. (She got diagnosed on 1st September 2012). My baby girl loved festivals. She loved the fuss of making mouth-watering savouries and sweets , the dressing up in traditional Indian clothes, the dancing to festival music etc. Ah…. How I miss that girl and that life.

So coming back to this new life of mine, yes I cooked a lot of food today. I feel thankful that my kids didn’t refuse immediately and seemed to enjoy them just like my Zoey did. I’m grateful that we were able to celebrate this festival in the sanctity of our new home. Yes I miss her. I miss her immensely, but I choose to be thankful for the remaining blessings in my life.

And Zoey, my beautiful little baby girl, Happy Krishna Janmasthami to you as well. I know, I don’t need to wish you as you are with HIM enjoying this day and having a blast. Love you to moon and back as always.

  Janmasthami 2016


Janmasthami 2016