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

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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A girl and two boys

It’s 2016 already and I haven’t written in forever. Time seems to be speeding by and I seem to get caught up in the day-to-day activities revolving around these boys. Yes this life with two active toddlers is definitely something, I wasn’t prepared for. It’s constant chaos right from the time they wake up, to their meals, to school drop offs, potty training, playtime, nap time …. one after the other all through the day. Most of time I have to remind myself to stop and enjoy the little moments of joy, hidden in between. And yes there are tons of those moments. These two boys are just what this bereaved mom probably needed to be mentally and physically busy…..

Today I am writing about something that happened over a month back. I was traveling down south for a family event at my maternal uncle’s house. I had left the boys (all three of them) back home and after much contemplation decided to go alone. I was looking forward to some quiet time, which has become a luxury these days. I arrived at the airport early to check-in, only to find my flight was cancelled. The only other flight that was going to that destination was leaving several hours later. So here I was at the airport with over 6 hours to kill … All by myself. I had wished for alone time …. Hadn’t I ?
However, being stuck at Bangalore international airport isn’t all that bad. You have free WiFi, tons of eateries and window shopping opportunities. After hanging out in the WiFi lounge for a while I decided to go and make myself comfortable at the departure gate. There were quite a few people waiting already and so it made sense to go early and get a place to sit comfortably. There I met this elderly lady who was clearly bored and was eager to have a conversation. After losing Zoey, I typically avoid random conversation. Something I stopped doing…. Just no enthusiasm to make small talk. I know that sounds snooty , but it isn’t. I just don’t have it in me anymore.
But I didn’t want to be rude to this elderly lady. We exchanged the usual “Are you from Bangalore?'” Then she asked the usual “Do you have any kids ?”. I said yes and didn’t bother to clarify further. Then she asked, “How many and how old are they?”. I was taken aback. It had been a while since anyone had asked me that question. Oh I found myself saying, “A girl and two boys. They are 8 , 3 and 1.5.” She was surprised, and complimented me on the fact that I didn’t look like a mom of three kids. As relentless as she was, she asked about their school and how they were adjusting to life in India. I again found myself saying “Oh my daughter is a doll, completely adjusted here and the boys are too young to care about where we live. They are happy anywhere we take them.”
That was that… I didn’t want to continue that conversation so got up on the pretext of charging my phone. I thought about what I had just done. When asked, I always maintain I have three kids. Most strangers leave it at that. However on that day a random stranger had gave me a glimpse of a life that would have been or rather should have been. How I wish I could see my Zoey as a bright, intelligent and confident 8-year-old. Maybe if she was here, she’d travel with me. Maybe she and I would have our girls-only trip somewhere. I’m sure she was right there smiling down on her mama fabricating these stories about her. I’m sure she accompanied me on that trip in her own special way.

I Miss her. Plain and simple. Miss her so much. Every minute of every hour, everyday I miss her. It’s like breathing …

Zoey and I in New York, for breakfast. Oct 2012

Zoey and I in New York, for breakfast. Oct 2012

Three years

Tomorrow is 25 November 2015. Three years back I experienced a parent’s worst nightmare. Three years back , on that Sunday after Thanksgiving, I lost my beautiful 5-year-old princess to brain cancer. Zoey took her last breath in her dad’s and my arms. She was calm, peaceful and from what she told us then, she was looking forward to stealing butter with her beloved Krishna. It’s unbelievable that it has been so long since her passing and also unbelievable how much has changed since then. But through all these changes the person that has been there for this family is her amazing dad. So on the third anniversary of her passing, with her dad’s permission :), I’d like to share an email Zoey’s dada sent to all her loved ones. Zoey, your dada has come such a long way since your left. Now you already know that, don’t you? You must be so proud of him. Love you to the moon and back baby girl. Moon and back.

Karthik’s email to Zoey’s loved ones:

Tomorrow it will be 3 years since Zoey’s passing. I can still feel her little body in my arms as soon as she came out of Suman and in the same vein I can also still feel the frail body reclining against my chest (because her back and neck were perpetually hurting with the tumor’s pressure) asking me if she had my permission to go and play with Krishna now. November 25th 2012 is also crystal clear in my mind as I pressed the button to cremate her physical remains.

Samsara by definition is a mixed bag and now 3 years later I can’t help but feel overwhelmed by gratitude for all that the Lord has given Suman and me and I wanted share those thoughts with you.

He gave Suman and me the most gorgeous little girl. The five and a half years with her were unquestionably the most beautiful years of my life and I would not trade them for anything. She was being ravaged by a tumor that could have shut down her automatic functions like swallowing, etc. but yet with Lord Krishna’s blessing that did not happen. Even with that acute pain my girl demonstrated a level of poise and equanimity that one can only aspire to achieve over numerous lifetimes. Lord Krishna in the Gita says “samathvam yoga uchyate – equanimity is yoga” and my girl exemplified samathvam…what an incredible blessing for her parents to be able to witness that equanimity and watch her eat ice-cream as her last meal on November 23rd.

Now 3 years later as I reflect on the changes in Suman and my life it is hard to not to be overwhelmed by how blessed we are. We have 2 adorable and extremely naughty little boys at home. This past year has been wonderful in terms of the time spent with family. Zoey’s DIPG fund will hit its original target of $100K tomorrow with over 350 donors. Suman’s Facebook page “Cure for Zoey” and comments on her blog continue to remind us of how compassionate we can be as humans. And then there’s all of you. Your love and support has been tremendous for us. You have been there for us over these last 3 years while giving us the space to find our own strength…and for that we are incredibly thankful and blessed.

The Bhagavad Gita is the ultimate vedantic text and gives us a roadmap for living our lives the right way – do your karma in a dharmic way, understand and appreciate your inherent immortality, and then finally realize that our individual atma (soul) is a microcosm of the paramatma…i.e. we are a microcosm of God and have all the qualities of godliness within us. We spend so much our lives complaining about things around us or finding faults with other people or whining about things we don’t have or just in general being unhappy about our material lives. Zoey stared death in the face with a smile and a desire for ice-cream. When I told her I was angry with God for giving her a boo boo in her head, she said I was missing the point – God didn’t give her the boo boo, he was taking it away. Let’s take a moment today, to put all our complaints and concerns on the shelf and without asking for anything more, just say thank you to God for all that we have been given. On that note, once again THANK YOU for everything.

Love,
Karthik

Zoey's last trip to Baskin Robbins for ice cream

Zoey’s last trip to baskin Robbins for ice cream

Zoey's parents now three years later.

Zoey’s parents ….three years later.

Rainbow babies

Have you heard of the term rainbow baby.

A β€œrainbow baby” is a baby born following a pregnancy loss or the death of a child. Urban Dictionary defines a rainbow baby as the following:

In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison. The storm (child loss) has already happened and nothing can change that experience. Storm clouds might still be overhead as the family continues to cope with the loss, but something colorful and bright has emerged from the darkness and misery.

I really like the meaning.

Zoey was a rainbow baby.Zoey was born to us after 3 miscarriages and a very tough pregnancy. We thought we would lose her every step of the way, but she made it and completely changed our life. Yes cancer took away my rainbow baby. Hard to believe we had endure so much to get her, and then in 12 short weeks, it was all over. Sometimes I wonder, if I had been told the future, that my first-born would die in front of my eyes, would I still go ahead and have her? And surprisingly the answer is always a resounding YES. I’d take any time I got with her, be a minute, a day , a year or 5 years.

Anay. My darling boy. Anay isn’t rainbow baby. But he couldn’t have timed his arrival better. He arrived just 25 days before his Zo Akka passed away. It’s as if she handed her poor parents to her baby brother and left, knowing we will survive. He definitely was that much-needed rainbow, not only to Karthik and I, but to all of Zoey’s loved ones. He gave us all the reasons to get out of bed every morning during that miserable time. So yes he definitely qualifies to be that rainbow baby.

Hari, my Zoey’s Hari is a rainbow baby πŸ™‚ . All of 9 months old, he has become such an invaluable addition to our family. He is that adoring little baby, admiring his brother’s every move, learning, processing, absorbing everything he can. When he babbles “aka aka aka”, my heart believes he is playing with his Zo Akka.
During the last 9 months, many a time, I have heard well wishers say that we will have a girl baby again. I know these people are speaking from the goodness of their heart. However today I’d like to address that sentiment.

I think most people who think this way, probably believe that having a girl again will somehow reduce the void we feel after Zoey’s passing. Or may be they think having a girl baby again will give Karthik and I an opportunity to redo things we did with Zoey. First of all let me tell you, I don’t miss having a girl, I miss my first-born child who happens to be girl. I miss the energy that is Zoey. And second of all there is no replacing Zoey. Never.

I’m thankful for Hari, who happens to look and behave like his older sister, and irrespective of gender I’m grateful to him for having chosen me as his mom. I have come to realize that the body is just the body. While we are all immortal, the body is completely perishable. I’ve experienced that first hand with my Zoey. Gender is just one characteristic of the body. It has taken me a long time for me to accept this fact and to truly surrender to what life has thrown at me. Whether I am destined to mother a girl again, I don’t know. And I definitely don’t want to know. I know that I will always be a mom of a beautiful 5-year-old girl for the rest of my life. But today my role is to be that mom to these two darling boys. And I know for sure that this is exactly what my baby girl would want from her mama.

Coming back to my baby girl, the only reason for this blog’s existence. I miss every ounce of her. It’s crazy that in spite of being as busy as I am, I feel the void constantly. To list a few things I miss doing with Zozo:

Shopping with her was a pleasure. She would accompany me everywhere and give her opinions about what looked good on me and what didn’t πŸ™‚ yes my 4-year-old did that.

Little shopper

Little shopper

Library visits with Zoey. She had an innate interest in books. Loved the library and I took her there every chance I got.

Visits to the playground in the evenings. Yes I miss that a lot. Taking her to play outside in playground, especially in summers πŸ™‚

Playing

Playing

Zoey-mommy night-out. I’d pick her up from daycare and head to her favorite restaurant and then some ice cream. It was so much fun and I’d look forward to it all day.

Zoey’s deep hugs. Yes when she hugged you, she literally sunk into you. How I miss that hug.

Dancing with Zoey. Zoey loved dancing. Any chance she got, she’d get up and dance. Every time I hear Adele’s “Rolling in the deep”, I picture her singing “We could have had it all”, dancing to every beat of that song.

I could just go on and on. I love u Zoey, as always, to the moon and back. By the way your little brother says it too. He says it slowly spelling each word. πŸ™‚

What do you do with ALL the pink.

Zoey loved the colors pink, purple and red. So when she passed away so suddenly ( though we knew the nature of tumor, but it was still all so sudden), we were left with a wardrobe filled with all her beautiful clothes, tutus, frills and fancies handpicked by me, her dad and in some instances Zoey herself. Yes she had very specific likes and dislikes and this child was picking her clothes every morning from the time she was about 2 years old.

After Zoey’s demise we kept all her toys and books ( about 200 books) for her baby brother, who was just 25 days old at the time. However all her clothes …what does one do with all that pink ? We donated quite of a few of them to charity hoping some girl Zoey’s age would use it and be happy. We kept a few of her special items like her baby onesies , her blankets , her ballet tutus, special occasion clothes , slippers etc…… We just couldn’t part with them. However soon I realized that we had kept them locked in a trunk too long and if we did not do anything about it it would stay in there forever. So we decided to use most of the remaining clothes to make 2 quilts, one for her dada and the other for me. Yes 2 beautiful quilts made by a local quilter here with all her special clothes.
While absolutely nothing will bring back my Zoey, having all her special items in one place , and being able to snuggle in it whenever we want, helps us keep her memories alive.

Quilt for dada

Quilt for dada

Quilt for mama

Quilt for mama

I also love the fact that karthik’s quilt is pinker than mine. Daddy’s girl alright πŸ™‚

Zoey, I hope you loved these quilts as much as your dada and I. Love you to the moon and back baby girl.

Your mama

2 years later …. I remember

2 years. How could it have been so long ago, yet I remember every single detail like it was just yesterday. I vividly remember the last week of her life with such clarity that it’s like living that time all over again ….

I remember being scared ALL the time, not knowing what would happen to my baby.

I remember praying non stop day in and day out.

I remember lying in bed with her, while her dad used a stopwatch to count her breaths in her sleep.

I remember her holding Anay on her lap and singing to him. I remember her promising him she would play with him when he is old enough to play. I remember thinking to myself isn’t she in pain ? How is she doing this ?

I remember her dad calling the hospice nurse frantically to figure out the best way to make his princess comfortable and pain-free. When the hospice nurse came over, I remember not wanting to do anything with her, because a huge part of me refused to believe the truth: my daughter was dying. I hated the word “hospice”. And why would I believe anything else, she was so full of life even during the last week. Don’t miracles happen? Zoey’s birth was a miracle in itself, so why would I believe that she was given to me for such a short time.

I remember being asked to consent the “do not resuscitate” form for Zoey at the hospital. I remember asking her doctor the very last time if there was some hope for her. And I remember getting the same resigned look from her pediatric oncologist.

I remember how she ate ice cream as her last meal. The hospice nurse got her 3 cups with different flavors and she had every last drop of it …..my princess just loved ice cream.

I remember being told by Zoey’s nurse that Zoey was such an exceptional little child. She had never seen such a case in her 20-something years as a hospice nurse, where the patient was so aware, could eat, talk etc so late in progression. She said Zoey was something else altogether.

Oh I remember having so much hope. Foolish hope, that she would beat the monster. Someone had told us about this doctor in Bangalore that cures brain cancer and so the homeopathic medication made its way to the US for Zoey. I remember shoving those pills down Zoey’s throat even after she went into a coma ….yes foolish undying hope for a miracle.

I remember her asking her dada’s permission to go play with her little Krishna. The night she slipped into coma, she asked me if I would see her in heaven. I remember feeling shocked, since the concept of heaven had never been discussed with her before.

It was as if the entire universe and her Krishna were preparing her for her final journey and there I was hoping hope after hope that she would live. How foolish was I ? But I think it was that foolish and undying faith that kept all of us going. It kept Zoey happy right from diagnosis till the end.

Even today after 2 years, I wake up at times thinking it’s all a nightmare and she is right there sleeping next to me. Then I look at my bed and see the other blessings she left behind. It would have been a very different story had these blessings not been there in my life. I am thankful for them and try my best not to take them for granted. However every blessing, every smile, every joy that I feel, is always laced with a tinge of sadness.

This second year has by far, been the hardest year of my life. I’ve had some very dark days that I’m not very proud of. I think the first year went away in a fog. But this second year was just downright miserable. It’s like the fog has finally lifted and the harsh and cruel reality has kicked in big time. The reality that “This is it. There is no turning back from here. Life goes on and so must I, especially without my precious child by my side”.

So here I am, 2 years after saying goodbye to my one and only one baby girl. Still trying to survive one day, one moment and one breath at a time.

So tomorrow on the 2nd anniversary of her passing, Zoey’s dada, Zoey’s mama and her baby brothers will be spending time together as a family. We will probably head out to Zoey’s favorite ice cream store and indulge in some pink strawberry ice cream. Because as hard as the day will be for us, we’d like to remember the good times with our baby girl. We’d like to believe she is eternal and ever smiling, eating ice cream for breakfast, lunch and dinner.

Enjoying her favorite ice cream at Baskin Robbins.

Enjoying her favorite ice cream at Baskin Robbins.


Today I have a small favor to ask of all of you supporters out there. I request you to take some time from your hectic schedule and spend it with your loved ones. Maybe even head out for ice cream in the cold weather :). Do it in Zoey’s memory and think of her and other little kids suffering from terminal cancer like DIPG.

The last time she slept on me.

The last time she slept on me.

Lastly, I sincerely thank all of you for reading about my Zoey and joining in my journey as her bereaved mom.
Love you my baby.
Your loving mama.

Fear … Letting it go

Over the last 6 weeks someone or the other in my family has been sick. It’s nothing serious, just common cold, congestion and mild flu-like symptoms. But yes all of us have been feeling sick, including my 17 month-old darling son. Those of you who have been parents to a young toddler know that having a nasty cold at that age is never easy. You are always congested and the pediatricians don’t believe in giving you any kind of medication before the age of 2. So we have been having using natural methods like using the humidifier and applying baby vicks vapor rub etc. In-spite of all that, he has been up several nights, uncomfortable from the cold and congestion. For most parents this is not a cause of worry. But being a bereaved mom to a 5-year-old, I realized I will never ever be a normal parent again. Normalcy went out the door on September 1 2012. ( the day my seemingly healthy and happy 5-year-old got diagnosed with the worst pediatric brain cancer there is). Those sleepless nights with my son, brought back several memories that my brain had tried so hard to bury deep inside. It brought back thoughts of the month prior to her being diagnosed.

Right from the beginning, Zoey always slept with us. She would be sprawled out, right in the center of our king sized bed. She was a good sleeper as long as she was on our bed. But those nights, the month prior to her diagnosis, she woke up with occasional night terrors. We did not know what was causing this change in her ? She had no other symptoms from that tumor then. She would go back to sleep right after as long as I was there to cuddle her in bed. I took her to her pediatrician, only to be told that it could be because she was insecure, since she was our only child for so long and we were expecting her sibling. Later on, we found out that the pressure from the tumor in her brain, was making her uncomfortable at night.

So in the past few weeks, the nights when I held my son in my arms , trying to comfort him, I felt this irrational and unnerving fear creep in out of no where. My mind started racing with all the “what ifs”. What if this isn’t just a common cold ? What if it’s something more serious ? What if his pediatrician is wrong ? What if ? We were told, Zoey getting DIPG ( Diffuse Intrinsic Pontine Glioma) wasn’t hereditary or genetic or because of what we fed her or exposed her to. Also the odds of something like this happening again in the same family is extremely rare. But then I don’t trust the odds. My daughter was one among 300 kids out of the millions that are born every year. What are the odds of that happening ? It still happened and took her away. So don’t talk to me about odds being in my favor. Because they just aren’t.

You would think losing my full-of-life child so suddenly to an unknown cause, would teach me a thing or two about letting go and knowing that I cannot control all outcomes in life. You would think, watching my life take her last breath helplessly would teach me to love without attachments and fears. The saying “if you love something, set it free” …. Well as a bereaved mom I live that saying every second of the day. I had to set free the baby that I had prayed and hoped for and nursed to life for 5.5 years.
However when it comes to my surviving loved ones, be it my child, my spouse, parents etc my brain and my heart don’t seem to let go. The fear is always there lurking …..waiting to creep in and take over. Someday I hope to be free of this fear…. But don’t see it happening anytime soon.

Love u and miss you, my baby girl. Maybe only you can help me truly let go of my fear and insecurities someday…..Just maybe.

Zoey and me ... Normal a.k.a happier times. Miss that normalcy.

Zoey and me … Normal a.k.a happier times. Miss that normalcy.

New Year’s Eve 2013

We have survived over 13 months without our sweet Zoey. Karthik and I have survived her 6th birthday, her brother’s first birthday, our first Diwali without her, our first Thanksgiving without her, two Christmases and including tonight, two New Years without her. Yes life goes on and we go through it’s motions everyday missing our sweet baby with all our heart. So tonight we welcome 2014, hoping and trying to keep the faith, braced for whatever life has to offer in the new year.
As we enter 2014, I’d like to reflect on the lessons I learnt from my baby girl’s sweet but extremely short life. Moreover these are lessons for my son as he lives his life without his Zoey Akka’s physical presence by his side. ( I say her physical presence because I am convinced without any doubt, that her spirit is always, always and ALWAYS by his side.)

1. Have FAITH ( This one is a struggle for me everyday. But I am trying my best to keep my faith going)
Have faith in yourself and in others. Faith will carry you when reason fails you. Find something to have faith in, it may be in your GOD or it may the goodness and kindness in people around you. But always keep that faith.

2. Enjoy the little things in life
I have learnt this entirely from my baby girl. Being a busy working parent and always juggling between several chores, we sometimes forget to stop, take a moment and just be with our kids. We forget to enjoy the little things. We are always waiting for the next activity, the next chore that is … We forget the joy of watching a 5-year-old snuggle and talk to her soft toy in her sleep with wide smile on her face, or the joy of watching a 1-year-old play with his toy again and again as if he were seeing it for the very first time. I remember my Zoey telling me to slow down, how I was not to hurry her royal highness πŸ™‚ . It’s these little moments that matter most in life.

3. Family is the most important thing in life.
Your parents will always be with you no matter what you do in life. Your siblings have grown up with you and know you like no one else would ever know. Time may create distances in your relationship but at the end of the day, you can always , always count on them. For Zoey till the end, it was about her Dada, her Mama, her baby brother ( also called as soccer ball) , her Ajja and Domi (my parents) , her Thatha and Pita (karthik’s parents), her aunts, uncles and cousins. She insisted that each and every one come and sit with her, play with her and spend time with her during her last week here on earth.

4. Try not to be bitter ( learn to let go)
(This one is really hard for me. I struggle with it everyday , sometimes several times a day). Learn to let go off your expectations from others around you. Try not to assume and judge someone for their behavior. You don’t know what the other person is going through at the time.

5. Embrace life and death.
After seeing your child take her last breath in your arms, you have new-found appreciation for both life and death. You realize death is inevitable and there is no reason to fear or worry about it. In fact after the initial shock and despair wears off, you begin to embrace death in a new way. I will always be in awe of my baby girl as she embraced her final journey to eternity with such poise and grace. I can only strive to be half as graceful as she was when it’s my time to go. I know my girl braved to go someplace all by herself, fully aware there her Mama and Dada wouldn’t be able to join her. If a 5-year-old could embrace life and death in its entirety, why can’t we ?

The next time I post, it will be 2014. I’d like to thank everyone that joined our fight against childhood cancer and hope that in 2014, we will reach our goal for Zoey’s DIPG Research Fund at Stanford. I’d also like to thank everyone for reading about my Zoey’s life and following my journey as her grieving mom. I am truly honored and touched. A BIG HEARTFELT THANK YOU to all of you.
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