Happy 10th birthday.

My darling Zoey,
June 11 2017, you are all of 10 years old today. It’s been a decade since your dad and I embarked on a life-changing journey without having a clue of what was ahead. Today, we should be planning your sassy yet geeky big-girl birthday party. Maybe you would insist on having a sleepover with your friends at home or maybe your dada and I would have taken you to Paris to see the Eiffel Tower or maybe we’d all go to Hawaii for a good long vacation. Or I could be completely wrong and you’d surprise me and insist on a low-key birthday with your parents and little brother. Sadly, all of the above is occurring only in an alternate reality of mine . Even though that reality ceased to exist way back in 2012, for some unknown karmic destiny, I was forced to continue and breathe on.

So Zoey, your dada and I celebrate with you today in that alternate universe. We miss you like crazy … words fail to describe the feeling. Your little brothers love you as their Zoey Akka and they faces light up knowing its your birthday weekend. They’ve already eaten cake-pops, cupcakes and ice cream at several occasions during this past week ….and every time I smile and I think of your love for ice cream or just the frosting on the cake. This weekend a few of your favorite people visited us, your Asha Pita , Usha Pita and Avanti (Karthik’s aunts and cousin sister) . We laughed at how you always called them Pita instead of Patti (meaning grandma). We reminisced about the good-old days ….especially your pre-k graduation party in June 2012.

Zoey on her 5th birthday.[/caption]

Zoey, Zoey Zoey …. I could keep repeating your name loudly forever and ever. I’ve been asked several times in this past decade about the reason for naming you Zoey. See Zoey isn’t a name of Indian origin. Even after you passed away, many a times, readers of this blog have asked me the same question. So here’s the story behind your name sweetie-pie.

You were given to us after three heart-breaking miscarriages and a very tough pregnancy. For some reason you were always in hurry. At 20 weeks gestation you gave us a scare. We were told you if we didn’t intervene, you would be born in a few days. So your doctor decided to admit me to the hospital and keep me off my feet for the next 3.5 months of my life. I spent most of that time in a tiny hospital room, confined to the bed, praying and begging that you stayed inside safe and sound. I watched a ton of TV to keep myself occupied. So while laying in bed and watching TV I came across a show in which a woman is blessed with a baby girl after years of struggle and she goes on to name her Zoey. I immediately looked up the meaning of the name and loved it. The name Zoey is of Greek origin and it means “Life”. Such a perfect name for the one person who was about to come and breathe a new “life” into our existence. So I called your dad to ask him his opinion. I was still thinking about it, but your sweet dada loved the name instantly. I remember him proclaiming that from then on, Zoey was the only name for you. One and only one Zoey of ours. 4 letters and two perfect syllables. Zoey !

Zoey on her birthday

Every year for your birthday, your dad and I try to do something meaningful to support little kids suffering from cancer. So this year was no different. We celebrated your 10th birthday with a bunch of kids and their families on the oncology floor at the hospital you were treated. We did a make-your-own taco/bowl themed brunch, along with cupcakes and goody-bags for the little kids. I’m sure you were right there in your own way …..

Birthday cupcakes plus desert for her 10th birthday celebrations

I know today would have been entirely different, were you here physically with us. But since you had your own karmic journey (and I have mine) I will try to be happy with the 5.5 years I actually got with you. Your dad, your baby brothers and I will go to your favorite Krishna temple and maybe, just maybe, you will give us a glimpse, in your own magical way.

Happy 10th birthday my dear baby girl !. Love you and miss you to the moon and back , as always.
Your loving mama

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Ab to forever

Ab to forever – One song infinite memories

This is about a song from a random Bollywood Hindi movie. It happens to be a dance number and there is absolutely nothing profound or meaningful about its lyrics or music. The title of the song “Ab to forever” means “now till the end of time”.

YouTube link to the song: https://youtu.be/uOcNutyyy20

My initial memories of this song, are of a young dad and his first-born baby girl. This movie was released in 2007, around the time our Zoey was born. I am also reminded of another beautiful number titled “Hey Shona” ( from the same movie), that Zoey’s dad sang while rocking his new-born to sleep. “Ab to forever” was introduced to her much later, probably when she was around 2 years old. I can still visualize Zoey’s dad playing it for her on his laptop while she danced away without any inhibitions, moving every inch of her tiny body. Such a fond memory this is. If only I could go back in time and record it ……

The next distinct memory I have, is of a mother and her daughter sitting on the family room couch. It is September 2012 and their perfect world has been turned upside down. The little girl has terminal brain cancer and the mom is on bed-rest trying to keep a life safe, inside of her. Both have limited mobility. One is by choice, to avoid pre-term labor and the other is restricted by the monster growing in her brain. But both have one thing in common, undying love for each other. In this memory of mine Zoey and I don’t dance. We sit on the couch and move our arms in unison while we replace the words of the chorus by the words “Bring it on, Bring it on, bring down you boo-boo”.
We had so much hope back then, that the boo-boo couldn’t harm our Zoey. How could our Zoey die just like that ? No that wasn’t something that happened to regular people like us. How wrong we were.

Zoey and I


Fast forward 9 weeks into November 2012. In this memory a mother is holding on tightly to her baby girl. The little girl can’t dance on her own due to the aggressive nature of her cancer but the her mom can. In this memory, I hold on to my life, my Zoey, and dance away with silent tears flowing down my face. If I stop dancing Zoey doesn’t like it and she reprimands me. She wants me to hug her and dance forever …..probably just like the song, till the end of time.

Zoey on me after dancing to Ab to forever

The next memory I have is of November 22nd 2012, three days before she took her last breath. Zoey is sitting in the center of our king sized bed. She is surrounded by all her loved ones. Her paternal grandparents, her maternal grandparents, her aunt, her uncle and her unfortunate parents. Her new-born brother is sleeping soundly in the adjacent room. This song is being played over and over till she is tired of it. Zoey is still able to move her body, while sitting up by herself on the bed. (which is a miracle in itself). Zoey finds that her Domi (my mom) is unable to sing (due to tears) and she demands “Domi is not singing. Sing Domi sing!”. And all the adults sing like they have never sung before. We are swaying to the music and smiling while completely being aware of the futility of our actions. No amount of dancing, praying, bargaining or begging is going to save our daughter. We are merely going through the motions just to keep our Zoey happy.
I am so grateful to her dad and her uncle, who actually recorded this memory of mine. I have watched the video several times in the past 4.5 years, and every single time, I am in complete awe of my spirited baby girl.

Zoey in that last week

These days Zoey’s little brothers and I listen to this song sometimes while having breakfast. We typically have some music playing as the boys pick on their breakfast. The boys recognize it as their beloved Akka’s song. As I persuade them to eat yet another bite, I realize that I am making new memories…… in the background plays “Ab to forever”.

And yes, my dear Zoey, I get it completely. Our love for each other is exactly that …….it will last from now till the end of time.
Your loving mom

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