Profound conversations with my 5 year old baby girl.

As a recently bereaved mom, one of my fears is that, as the years go by, the memories of my baby girl may begin to fade. I hope to remember everything about my baby ….her likes , her dislikes, her cute mannerisms, her know-it-all attitude, her saying “I love you too mom” ….just to name a few things. But I know it’s only a matter of time. New memories will take the place of old ones and the old ones will tend to fade. So writing has become very important for me. If it’s all written down somewhere with all the nitty-gritty details, I know I can read it for years to come and know that her memories are intact.

These days I find myself trying to recollect our conversations with her during those last 12 weeks of her life.Yes those memories tend to bring tears to my eyes …….However I have a ton of happy memories of her from the time.
Unlike most DIPG patients, my Zoey was able to speak and express herself very well, up until the night she slipped into a coma. We were so blessed to hear her sweet voice till the end. Following is my recollection of some conversations with her during those last few weeks. These left a profound and ever-lasting effect on everyone at home and I am sure we will talk about it for years to come.

1. Mommy, why did I get this boo-boo

Zoey was only 5 years old when she was diagnosed with the worst pediatric brain cancer there is ( DIPG). We couldn’t tell her she had cancer and that she was not going to live very long ….also because I never believed that was the case. But we had to tell her something that made some sense to her. So we told her she had a boo-boo in her brain that was causing her to see double. We told her we will take her to the hospital everyday for her super Zoey ( radiation) sessions and that boo-boo had no chance against our super Zoey. I think she bought it in the beginning. Then in a week she realized that this wasn’t the kind of boo-boo that would go away in a day or two. She asked me a question that broke my heart into a million pieces. She asked why she got the this boo-boo? I was so angry at the time, and was asking this question several times a day …why my beautiful, compassionate and full-of-life child ? How was I going to answer her ?
Well I composed myself and said that she was very special and God ( her little Krishna ) was going to see her through it. I also lied to her saying that I have the same brain boo-boo and I see triple ( and not double) most times. She smiled at me and gave me a hug. I think she felt relieved that she wasn’t alone. I can’t imagine what else was going on in her tiny brain. I can only hope that we did everything possible to alleviate her fears and apprehensions.

2. Soccer ball a.k.a Anay will be born on November 1.

I believe sometime in October out of the blue she mentioned she was eager to play with soccer ball when he decided to make his appearance. Well I remember saying that I hope he is not in a hurry and anytime after November 8 (37 weeks gestation) would be great. To that my baby replied ” no mom, he will come out after Halloween on November 1″. Well it seems like the two of them had it all planned from the beginning…he was the first baby at the hospital for the month of November ( born on November 1). We were glad that he at least waited for hurricane Sandy to be over. So her prediction came true…. Who knew? Coincidence or something else … I wonder.

3.Bring it on, bring it on, bring down you boo-boo

There was a Hindi Bollywood movie song that Zoey and I would love to sing and dance to. She quickly replaced the chorus lines with the words “bring down you boo-boo”. After her diagnosis we decided to not send her to school, and instead spend every minute we got with her. So she and I would spend countless hours on the family-room couch playing scrabble, reading, watching movies, singing various songs, but this one song stuck till the end. A few days before she passed away she called all of us (her maternal and paternal grandparents, her aunt and uncle, Karthik and I ) to our room. She insisted everyone sit in a circle and sing this song together. She ensured everyone of us sang the song over and over again. If she caught my mom crying …she would shout out “Domi is not singing …please sing Domi..”. Such was her undying spirit. I think it was her telling us that even though her fight was coming to end, we should still continue our war on childhood cancer.

4. Anay, when you grow up let’s sing, dance and play all we want.

Oh , my Zoey was just the best big sister in the whole wide world. She loved Anay from the minute we told her about him about 6 months into the pregnancy. She named him candy-cane in the beginning, and then she named him soccer-ball because of how round my tummy looked as my pregnancy progressed. In her last week she held him on her lap, and told us “I love Anay too much.” Then she looked at him and promised him that when he grows up, they would sing, dance and play together. I am grateful that she shared this with us and we had the insight to actually record it. Attached here is a picture of her and her soccer ball a few days before she passed.
image

5. Mom, I want to go back into your tummy.
One evening out of the blue, she expressed her interest to go back into my tummy. I was surprised ! I told her it was very dark inside and there wasn’t enough room to even stretch properly. But she insisted again, how she would go back if she could. I wonder what was her thought process at the time ? If I could, I would my baby girl ….anything to protect you and keep you safe.

6. Krishna is calling me ……can I go dad?
Most of you that have been following this blog, are already aware of Zoey’s devotion and spiritual inclination/obsession with little Krishna. The last week of Zoey’s life, she and her dad were inseparable. She would spend hours with him either on our bed or on the couch. Her dad was her best buddy. “Go east go west, my daddy is the best” and I have to agree with you, Zoey, your daddy is the best. He is the best daddy there ever can be. So sometime during that last week, she got up from sleep one morning, smiling cheek-to-cheek. Her dad was right next to her when she woke up. When asked about her dream, she said she had a secret to share with her daddy. But she insisted her secret not be shared with me, her mama. Then she told Karthik, how little Krishna came in her dream asked her to join him to steal butter. (For those not familiar with Krishna stories, he is supposed to have been a very playful and naughty little boy who would just loved butter). Her daddy being the best daddy that he is, told her to go and have fun with her little friend above. I believe this was my little girl preparing us for what was to come in a few days. She knew her mom wouldn’t be able to handle this conversation, so she chose her Dada to share her last secret. I am amazed at how death manifested itself for her. I have read that most people are scared to leave this physical world, but not my girl, she was excited to go play in the heavens above. We were truly blessed to have such a pious soul amongst us. Again I consider this the ultimate blessing she gave us, as her last parting gift.

Love you my Zozo…. As usual to the moon and back, to the moon and back.
Your loving mama

Zoey and her proud dad.

image

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181 thoughts on “Profound conversations with my 5 year old baby girl.

  1. Dear Suman
    As a single mother to a 3 and 1/2 year old one of my greatest fears since I was pregnant has been losing him. At some point I let go of the fear realizing it won’t make either of us happy. Yet I hear stories like yours all around me and I know the fear is real and possible. I don’t know how you survived it. I am sure it’s been a struggle. There is nothing I can say to make it any easier for you. But know that the response to your blog is from people in all corners of the world who wish they could hold your hand, if just for a moment, to help you in their own little way. You are not alone.

    • Just want to send you a big hug as my eyes are full of tears n choked. You are a brave mom… and your daughter is beautiful. Sure she is enjoying the butter with little Krishna. God Bless !

  2. Thank you for sharing your story. Your strength is truly inspirational & I cannot begin to imagine what you have all been through. I’m sure Zoey is enjoying her butter with Little Krishna. May she RIP, god bless you all. {{HUGS}}

  3. Reblogged this on justxpressing and commented:
    Being a mother of a two year old beautiful princess, this post really made me realise how vulnerable life is..and how precious are the little moments each day brings….
    I know I cannot even begin to feel the loss Zoey’s parents have gone through…but my prayers and wishes go out to them…I am inspired by their strength and positivity…may this positivity stay with all of all, all through…
    And yes, Zoey…I am sure Krishna is taking lots of care of you and making sure that you are having fun….

  4. Fabulous courage and will to keep those precious moments captured in writing and pictures for ever. After all what is life without memories of our loved ones. Salute to you both (parents) for having endured this terrible mishap and yet composed to share your feelings for your dear Zoey so that others, impacted personally or not, can still appreciate how wonderful her family was, is.

    I’m sure Zoey is smiling at her beloved family from above as she plays with her friend Krishna

    Take care!

  5. Dear Suman,
    I don’t have words, and I don’t know what exactly i am typing. My eyes are brimming. You are brave, you are strong, and zoey is always with you. That’s what i want to say. i have a 5 year old son, and I see your Zoey in him. God bless all children.
    Love to Anay

  6. Hey…dont know you guys…this is heart breaking post. As father of 6 yr old girl, I know how special girls are. I am sure little zoey is still looking at you from above and will be with anay for his life journey. Pray that you guys stay strong thro this.

  7. I came across your blog via a Facebook link. I am a mother of a 2 year old & worry about little / irrelevant things….. The strength your little girl displayed has moved me to tears…. You must be strong too to be able to write & share this…. Thank You!

  8. Dear Suman,
    Zoey is sooo beautiful.. Can’t even imagine what your family must have gone through… May god bless her beautiful soul…. Lots of love to your family…

  9. Dear Suman, It is by chance I came across your blog. It has reduced me to tears after reading your emotions through your blog. You truly are a strong lady. Your little girl Zoey is a beauty and it is sad that she has left this world for another. Her innocence is a true treasure that makes many people like me love her even more. Losing a child at such a young age is the hardest thing a parent can go through and you Suman are an inspiration. It must pain you to put her life in words but have courage, its the best memory your making of her life. Stay positive and know she’s always with you. ((Hugs))

  10. Dear Suman,

    You are truly brave parents little Zoey would be proud of. Keep your strength and I hope she is having good time eating Maakhan with her little Krishna.

    Kind Regards

  11. Dear suman..it the bravest mum ever…I can’t even imangine ur pain…I would have truely lost it…I have 2 girls and my heart just breaks over n over and over again thinking about zoey…I want to give u and your family a million hugs.and I know Krishna is taking care of her..u are an inspirationand I salute your valor in this battle. I don’t know where u live..I am in Chicago.and sending u sooo much hugs and prayers…

  12. Dearr Suman hats off to you and your husband to be such brave parent. I love your Zoeys spirit .. God give you strength cant write anymore have no words

  13. Understand your pain and lost. It’s been 3 years since my only neice left to go play with the angels. We had 11 months to cherish our 5 year princess after diagnosis. We sang and played until we were all fatigued. Thank you for sharing. Stay encouraged you are not alone.

  14. I can’t stop reading this again & again & every time I well up with tears….
    And as I read it again a thought occurred to me… Was she going to go & play with little krishna for a while & then come back again into her Mummy’s tummy & keep the promise she made to little Anay- that when he grows up she will be there to play & dance & sing with him?
    After all her prophecy about Anay ‘s arrival and her premonition that it was time to go to Krishna came true……

  15. Dear sweet mommy & daddy… Zoey is safe cuddled up in Krishna’s arms. Now we have our lil soccer ball who is as much eager n charming n cheerful as every toddler n I Want daddy n mommy to cherish his every act. I lost my friend at Age 21 in an accident couple of weeks before her wedding n saw her mom crumble n lost track of my Pavithra’s baby sister.. Take care dear mommy n daddy .. World will not forget Zoey’s kind eyes or her affectionate smile… Muuuahhh to our new angel..

  16. Cant stop crying. This post made me realise how much I take for granted, the precious time I have with my kids. God be with you and your family…..

  17. Reblogged this on Whims and fancies and commented:
    I am all in tears. My heart goes out to this little girl and her family. May Almighty give them all strength to bear the loss of their angel. Writing them down, all the memories is the best healing. From Edison, NJ, US, sending tons of love, hugs, and peace to Zoey’s family!
    Love,
    Minu

  18. ((( HUGS ))) As a mom of a kid, I absolutely feel the pain you would have gone through!!! I appreciate your effort to make awareness for cancer. You are a true ROCKSTAR! Take care.

  19. With tears in my eyes .. I pray for ur little doll that may God be with her. Lost my mom recently and could relate to so many things with u .. She became a baby in the last few days. It’s difficult to understand God’s play or Krishna’s Leela .. Take care you all. Hugs

  20. What a blessed little girl, for Krishna to call her to join Him in her dream, in her last days! In the Bhagavad Gita, it is taught, those who worship Him, and those who remember Him in their last moments, reach Him. In the Hare Krishna faith, it is believed that in Goloka Vrindavana, the devotees of Krishna eternally serve Him and enjoy His sweet pastimes. Perhaps little Zoey could have come there to join Him in His sweet lilas of playing with His friends. Surely, wherever she is, Krishna must be taking care of her. All glories to this sweet little devotee of Krishna!

    So sorry for your terrible loss. But hope her bright spirit and her faith in Krishna have brightened your days. Please find strength in Krishna, and His loving care.

  21. Suman- I want to give a tight hug now…You are so brave and all I can say is that you are doing a great job jotting down your memories of zozo…She is sooooo beautiful and will forever be in our hearts…I shared your blog with everyone I know and have asked people to donate generously for the cause…stay brave …You are doing a great job!!!

  22. Dear Suman,
    I read this blog yesterday, and haven’t been able to stop thinking about Zoey and your family. I am out of words and really don’t know what to say. I had tears in my eyes and was speechless for most part of yesterday. I Have shared your blog with many of my friends, and have urged people to donate to the cause. I am sure Zoey will not only live on in memories but also be a reason that this horrible disease is cured one day.

    My prayers are with you.

    Thanks
    Ashok

  23. Dear Suman, the immense love that you have for your daughter comes out in each word that you’ve written. I read your blog the same time as I myself suffer from a personal tragedy in life. I lost my father-in-law just a week back. For my husband, he was the hero of his life and for me a loving father. Your words made me cry. I believe that our loved ones have gone to a better, happier place and their presence will always be a part of us. Your beautiful daughter will always bring you happiness and peace wherever she is. I bow to your determination and strong will… may Krishna bless you with all the joy in the world.

  24. Pingback: Profound conversations with my 5 year old baby girl. | charysudha

  25. Zoey was able to see beyond the obvious.
    “Mom, I want to go back into your tummy” – This sends out a subtle but strong message.
    May be, just may be, the above statement will surely hold true (if you believe in rebirth).

  26. Hats off to you & Karthik. Zoey was Lord Krishna’ avatar I would say.God bless you and give you and all the people who are with you in fighting for this good cause. Best wishes. Shailaja.

  27. Dear Suman,
    I wish I could hold your hand and hug you just for a moment. You and your husband are wonderful parents and Zoey was lucky to have you as her family. Your beautiful girl will always be the strongest girl I have known. I am sure Krishna is eating butter with her now!
    Bless parents like you to have many, many more daughters!
    Adity

  28. Dear Suman & Karthik,

    I wish I knew a way to make the pain better for you, I dont. I wish I could soothe you by saying I know what you are going through, I dont, I dont have a child.

    I just want to tell you something I now strongly believe in – We are all connected by grief, it just looks different on everyone.

    I lost my beloved father to cancer a few months back, it was a heartwrenching experience for me. Like any daughter, I used to worship the ground my Dad walked upon and I questioned my faith everyday – why my father?! But, thats the beauty of these chosen ones – Just like your lil angel ZooZoo, my Dad taught me so much in his last days too! He was an adult, knew exactly how much time he did (or didnt) have. Never once did he break down in front of us, he made sure he put up a warm, hopeful and cheerful face for us.

    I believe that they are more much sensitised in their last days, just like the lovely Zoey who said things to you no 5 year old might be able to figure. But, it was Krishna talking to you through her. My father was on life support for 14 days… The day my mum, brother and I had our individual chats with him – Telling him how much we love him, will miss him and promised to take care of our mother for life – was the day when my Dad left us. Some say, the ‘aatma’ was only waiting to be released from the emotional bonds, worry for us was holding him back.

    I do hope you feel Zoey’s presence around, she is still there, looking over all of us with that soothing smile of hers. We shall continue our fight against this deadly disease, which took so many of our loved ones away from us.

    You will be in my prayers, often. Stay blessed!

    Neha

  29. I came across your blog only recently. As a mother to a young 5-year-old daughter, I cannot begin to imagine your pain. Zoey was a very clever girl, wise beyond her age. I can’t even think how you endured the last few months of her life, with little hope for the survival of this cheerful and spirited little girl. I am extending you a huge virtual hug. You both have been very strong, and I am rooting for you to find peace and hope to move forward, while you cherish the beautiful memories of your little one. May Krishna bless you.

  30. Dear Suman,
    I came across your blog passed on fb. Its been 2 days and my eyes are still brimimg. As parent of young child I can’t imagine the strength one would need to face what you had to. It’s the worst nightmare yet you have shown incredible strength.
    Zoey is an inspiration! Salute to you and your family.
    Hugs!
    -Rashi

  31. Dear Suman ,

    I have read your blogs and have been an anonymous donor to DIPG foundation due to Zoey. Your blogs have made me tear up but I also find solace in knowing that little Zoey is comfortable with her Krishna in the heaven above. She is watching all of you and I am sure the foundation will
    have lots of resources to do further research and find a cure for this disease because of your efforts. I pray for your family and your blogs have inspired me and educated me on pediatric cancers.

    Prayers and hugs,
    Savita

  32. Great ! Cried my heart out, your daughter is in my heart my heart is with u people. may lord Krishna bless us all.

  33. Suman..Those who the Gods love,leave young..the memory of your little baby will always be fresh in your mind and little Krishna will always remind you she is safe with him..admire both of you(her parents),,she held her little brother,so take solace and everyday see her in him,she is remarkable and you have done a lot to help others with your vivid blog..wish you strength,hope,happiness and lots of love and togetherness..

  34. Hi Suman,

    I read your blog yesterday and your family and Zoey has been in my thoughts ever since. Your Zoey seems like a special child and one thing which really stuck out for me was when she told her dad that god didn’t give her the boo boo but is helping her fight it. She was indeed special to have this positive outlook and insight at such a young age. I would never have had such an outlook and am sure most adults would be the same. So I am humbled by her. I hope that she is having fun stealing butter with Krishna. She will be in my thoughts.

    Also, thanks for the blog. It’s beautiful since it comes from your heart, but most importantly it throws light on childhood cancer. I would only think about cancer when I prayed that none of my loved ones get it. I didn’t know that research on pediatric cancer was so far behind that of adult cancer. I am shocked and can’t believe that this can be happening. Your blog throws light on this issue and hopefully would raise awareness on this issue.

    May god bless your family as he did when he sent you Anay right before taking Zoey. I really think that was god’s way of giving you strength to get through your terrible terrible loss. All the very best to you and your family.

    Sowmya.

  35. Hi Suman,,

    I have read your blog a few times as it was circulated on FB. The first time I read it, I couldn’t hold back my tears. I am blessed with 2 beautiful daughters. Krisha is 5 and Khushi is 2 years old. We talk to our daughters about Lord Krishna the say way you did to Zoey and they love him dearly just as Zoey did.

    I want to tell you about a small incident that happened yesterday. Khushi had seen a toad in her school in the morning. As she was telling me what it looked like, she asked me “Who fixed (made) this toad?” I told her, “Krishna did honey, just like he make you, me and everything else”. She was quiet for a moment and then said “Mommy, he made you, me, sky, Cinderella also. I saw Zoey.” Suddenly, I was confused. I asked her who she was talking about. She said “I dunno”. Then I asked her what Zoey looked like and she replied “Mom, she looks like a princess”.

    I had to tell you this little story as it made me think of Zoey and somehow my heart tells me that though my kids have never met or even heard about Zoey, she is living in the hearts and minds of little kids everywhere. Beauty and innocence lives forever. God bless!

    Lots of love to Zoey

    Kavita

    Krisha and Khushi’s mom

    • Kavita, thank you for sharing this incident with me. I was having a one of those days when getting out of the bed seemed hard, but reading you narration of how zoey is living through little kids throughout the world helped me immensely. Small comforts for the broken heart, I guess.
      Thanks again,
      Suman

  36. Dear Suman,
    I stumbled upon your Blog as I am trying to understand the monstrous DIPG. A friends beautiful 4.5 year old daughter got diagnosed by the killer cancer two days ago and I am coming to term with what a tumultuous road there is ahead for her family and friends. As I read your Blog, I can only think of the courage you embody through your writings. Zoey must have inherited your courage and strength!!! Thank you for sharing your beautiful memories – they bring in the hope factor to this otherwise helpless situation

      • I can not even imagine what a parent goes through in such a situation, so I am hoping they are keeping up their faith and courage while we all come to terms with it. I did see you share their page (Anya Anand) on facebook.

  37. Suman
    Zoey is an inspiration on how to see god and believe in him endlessly even when the going gets tough.
    Love you little girl.
    Anusha

  38. Suman, all this time and your little angel is still in my thoughts, on those days when i’m feeling sorry for myself for something stupid I think of you, on those days when I want a break from my kids or they are being loud and rambunctious, I think of you. You’d give anything to have her back and here I am complaining. Your story always pulls me out of the negative moods I may be in, we all take everything we love for granted and believe it or not, I read Zoey’s story when you first posted it and I still think about her and you…just wanted to let you know, your story helps people, even in small ways and i’m sure there are many, just like me, who can never forget your little angel.

  39. Zoey is amazing. She did more in her short 5 years in terms of touching hearts than people do in a lifetime 🙂 That said- what a beautiful community you are a part of! Zoey is the kid that made you a mom- she will always be a special special kid- to you and to all of us who read about her. Thank you for inspiring us with your writings.

    • Thank for taking the time to read about my love. It makes such a difference to this bereaved parent to know that people are reading about her baby girl . Thank you
      .

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