5 years

Zoey’s dad’s blog post on the fifth anniversary of her passing.

November 25th marks 5 years since my daughter, Zoey, passed away from an inoperable brain tumor. As my wife and I look at our lives in the 5 years since her passing and compare it to the years prior, there are absolutely no similarities. It’s as if we died with Zoey 5 years ago and are now living another life. A life that is full to anyone who sees us including our family…because they see us as the parents of two extremely naughty boys who constantly keep us on our toes. What isn’t seen is the fact that every happy moment is tinged with an element of “if she was here”. The loss of our child will never leave us and the notion of time heals all wounds is incorrect…time doesn’t heal a wound like this, you just learn to live with the pain.

I don’t want to spend any part of this blog post writing about the pain of losing a child. I’d rather focus this blog on the blessing that it was and is to be her Dad. Zoey was 5.5 years when she passed and those were some of the most beautiful years of my life…I’m sure my wife will agree as well. Holding her for the first time in my arms was perfect in every way and I remember thinking to myself that a moment couldn’t get more perfect than that particular one. There were tons of times over those years with her when I had to redefine perfection.

Kids have a way of keeping things simple and ensuring they are always viewed with the right perspective. When Zoey was four, her mom asked her if she knew what her Dad did for a living…Zoey’s response was priceless in its simplicity. She said her Dad’s job was to pay the bills. After her tumor diagnosis, she and I were driving somewhere and she saw me crying. When she asked me why I was crying, I told her that I was angry with God for giving her a boo-boo in her head. She decided to gently give me the most important life-lesson I’ve ever received by telling me that I was missing the point – God had not given her a boo-boo but was taking it away. The week before she passed, she was in acute pain and on palliative care with high doses of pain management drugs. She and I would spend all day in bed together and then at night she would lean against me in a reclined position to try sleeping because lying flat on the bed probably hurt more. On one of those days, she waited for her mom to leave the room and then told me that she wanted to ask me something but that it was a secret. She then told me matter of factly that Krishna (Hindu God that she fell completely in love with post-diagnosis) had asked her to come and play with him, and she wanted my permission to go to him. While responding to her that she should go ahead and go play with Krishna in a place where she would be pain-free and the boo-boo wouldn’t be there anymore, it struck me that my five-year old in the midst of acute pain had still had the presence of mind to realize that her Mom wouldn’t be able to handle that painful conversation. There are several other such conversations that I choose to think of as blessings, because that is what they were…opportunities for her Mom and Dad to learn from an old soul, our daughter.

Zoey continues to be a part of our lives and our daily conversations. Her brothers hear about her all the time and if asked to discuss their family always make it a point to include her in the picture. When my older boy, who was born the same month that she passed, writes his siblings’ names, he always calls out both Zoey and his little brother Hari. She is their sister who visits them while they’re asleep and lives on the moon based on the stories they’ve heard from me. They know she’s always with them and we know she’s always with us. Even though I can’t see her physical presence, when my mind is really quiet, I can hear her. Hers was the voice that led me down the path of finding inner peace through the teachings of Vedanta. I can feel her continually challenging me to be a better person. She has been my inspiration and guided me on my spiritual journey, gently coaxing me to go deeper within. I see her guiding hand in my wife Suman’s blogs which continue to be a source of inspiration for hundreds of readers who see her not just living but thriving as a mother in the aftermath of a deep personal tragedy.

Here’s the reason why I wanted to share this deeply personal story with you. Our lives are filled with challenges and how we deal with them defines the quality of our lives and our mental states of happiness or sadness. We are constantly faced with forks in the road where we need to make choices. Virtually every single action, verbal or physical, is based on a personal choice. What if when we encounter these choice-oriented forks in the road, we focus on the one person we don’t want to disappoint and ask ourselves if the chosen path would meet their approval? Wouldn’t knowing that they would approve make you a better person and more comfortable about where you’re headed? People who feel they are doing the right things are generally happier and lead more fulfilled lives. I find myself constantly asking myself if Zoey would be proud of her Dad or disappointed if I did a certain thing and I’ve found it to be an invaluable method to do more things right than not. Right in this case is a matter of perspective with you being the judge, because only you have to live with your choices and the associated consequences.

To our friends and family, thank you for being there for us.

Always,
Zoey’s Dad

A family that once was ….

Miss her so much.

Our three kids

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Home sweet home

Home sweet home !
Zoey’s dad, her brothers and I just committed to living under one such roof. We had toured a few houses in an area that we liked and luckily found a place that would suit most of our needs. No pie-in-the-sky aspirations about this house like our first home, way back in 2005. It had to meet our basic accommodation and comfort requirements and the one we liked, did that quite adequately. As we completed the formalities of the transaction, I happened to notice the excitement in all the people involved, be it our realtor, the seller’s realtor , the various attorneys etc. They innocently asked us whether we were ready to settle in and congratulated us on this new “phase/beginning”. Karthik and I just smiled through it. As we signed on the dotted line, I felt numb. Shouldn’t I be feeling happy or possibly remotely excited ? I had a smile on my face but I kept thinking to myself, “Why are they so excited. It’s just a house ? ” . Then I realized ….these people hadn’t seen their full-of-life child die right in their arms. I have to say, the image of Zoey’s last moments keeps coming back and with it comes this huge wave of gut-wrenching grief. However these days I seem to have good control over my tears and I force myself to think of happier times with Zoey. But this definitely wasn’t one of those controlled moments. We completed the transaction, walked out of the realtor’s office, sat in the car and I broke down, sobbing loudly. Her dad understood. He just sat there holding my hand for a moment. He remembered as well. The last home we bought, was when our first-born was alive.

I remember Zoey was about 3.5 years old. Zoey, Karthik and I had driven down to Princeton to tour the house. She walked into the house and started playing on the stairs. We looked at the rooms and she asked to see hers. Later, once we moved in, she insisted her room be painted in pink. She and I decorated the walls with beautiful flower decals. There was a neat little book shelf loaded with books that she enjoyed daily. It was a beautiful room for my beautiful child. She spent most lazy afternoons napping, reading and playing there with me. I feel blessed to have had that kind of time with her. How can I ever forget that home. It had Zoey written all over the place. It was hers. Truly hers. And when she left us, it didn’t make sense to continue living in that home, Zoey’s home. It just didn’t.

So here we are today, trying to do the same with our boys. The older one is also 3.5 years old. And younger is just 2. This new house will be their home. I know that excitement doesn’t exist for her dad and I. However for what it’s worth, we will try our level best to find joy again in this new house of ours. Find joy, find peace and find contentment ….hopefully. I won’t say things like “I hope these boys get to grow up in this house”. I don’t have that luxury. The future isn’t guaranteed to anyone. All I can hope and pray for is for happiness and contentment in the present and only the present.

Zoey I know you were there by my side, as I choked down a tear, trying to force a smile when signing that document. You were there all along. I felt your undying spirit guide me but all my heart wanted was a tight little hug from my girl. All my heart desired was the physical touch of your soft skin and your kiss on my cheek. …….someday maybe someday. Love you baby girl.

Your mom.

Our new home

Our new home

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.

18 months and counting

18 months since I felt her warm embrace, felt her soft skin against my cheeks, or listened to her sing and say “I love you too mom”. Yes 18 whole months and god knows how many more to come. It’s unimaginably scary, ….. To live a lifetime without her by my side. And yet here I am surviving this nightmare one day, one moment at a time.

18 months and so much has happened. Those of you that follow us on Facebook are already aware of our latest addition to the family. Our third child, Zoey and Anay’s baby brother, a.k.a Zoey’s little Hari made his arrival earlier this month. I call him Zoey’s little blessing because I feel the universe gave us back, a small part of my Zoey’s undying spirit. Moreover I truly believe that he is here only because of my Zozo. While it will never ever be the same as having my Zoey here with us, it definitely is a soothing balm for the broken heart. I am thankful for both Anay and now Zoey’s Hari for having that effect on me.

So yes all of sudden life has gotten busier with 2 little boys at home. And being busy is good since it keeps the mind occupied. However grief always has a way of creeping in. I am beginning to realize that this grief will never go away. We ( the bereaved ) live in 2 worlds. The world that once was…. With my beautiful daughter in it, and the other world that is today. I am also beginning to realize that the number of people who knew my Zoey will only decrease as the years go by. In fact when I meet strangers these days, I guess I appear as a happy mom of two young boys. They have no idea of my Zoey. Zoey is mentioned only if I insist on bringing her up in a conversation. Even then people don’t really know my Zoey. They just nod their head, shrug their shoulders and express their condolences … And the conversation moves on to a more pleasant and less awkward topic, than my dead daughter.
So yes that world with her in it, with Karthik and me as her parents seems like a beautiful dream, while the present is completely unrecognizable. A good friend once told me that the only way to survive, is to find a balance between the 2 worlds. So yes every day is a struggle to find that balance. It’s a struggle to find the strength to do what’s required daily without letting oneself wallow in the past. It’s a struggle to provide a happy and cheerful home for our boys. I see me struggle, I see her dad struggle and I see all her loved ones struggle and suffer every single day. I guess it’s something that we will get better at hiding over time. But nevertheless the gaping hole or the void that my Zoey left us with, will always be there.

So it is Memorial Day today. I remember Memorial day 2012 like it was yesterday. Zoey was so excited to make a trip to the beach that weekend. We had been contemplating that trip since I was still in my 1st trimester. However I am so grateful that we went. Because it was our last holiday together as a family of 3, as Zoey, Mama and Dada. We went to Cape May, NJ for the weekend. We spent all our waking hours at the beach. Here is a picture of my girl enjoying that weekend. Here is a picture of the family that once was.

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Unfortunately we never got to go again as that beautiful family of 3. That family of 3 only exists in pictures, videos and our memories. When I see those pictures or videos, it’s like watching an old nostalgic movie ….. With tears streaming down my face.
Right now the task at hand is the adjust to life as a family of 5.With two boys and memories of my beautiful girl. Again it’s something I will accomplish one day, one moment at time.
Love you and miss you loads my Zozo, as usual to the moon and back, to the moon and back.