Grieving the Loss of the Perfect Child

From the time a baby is conceived, parents and close family start weaving their dreams around it. How would it look like, a girl or a boy, what kind of a person will she grow into and so on. We all have our image of a perfect baby, the perfect child. He is an embodiment of our dreams and aspirations.

When we found out we were having twins, we were ecstatic. Images of fun filled laughter, two little babies gamboling together, two pairs of little feet running around the house, filled our minds. We loved watching twin videos on YouTube, tickled with the thought that this fun would soon be ours. When Abeer and Anvay were born – we talked often about how they would turn out when they grow. Abeer, the attitude kid, looked set to become a Rockstar and Anvay, with his perfectly proportioned body was going to be our super model. We imagined the two boys and their same aged cousin, in their early twenties at Arnav’s wedding. Three lanky young boys, having the time of their lives.

But now I am not so sure if these images would ever become reality. Because unknown to us, while we celebrated the birth of our twins, Anvay had sustained brain damage. Anvay, the healthier of the two, who was not even a likely candidate, had sustained brain damage. I have no clue, what happened between the two minutes between the time they both came out, that led to this. Their birth was apparently normal. The doctors did not find any anomaly. In fact, they did not even do an MRI when Anvay was discharged (which they did on Abeer) from the hospital – I am assuming because nobody expected what had happened.

The news that your baby is damaged is devastating to any parent. Devastating is actually putting it very lightly. It rocks the world of the parents. All the dreams, hopes and desires come crashing down. The process of grieving begins. Yes, it is grieving. You grieve for what could have been, what should have been and why it isn’t what should have been.  The parent grieves for the loss of the perfect child, the imagined child. A parent will typically go through all the stages of grieving – denial, anger, bargaining, grief, and eventual acceptance. I recently read a blog from a parent who writes about grieving for a child she has not lost.

I like to believe I am stoic. And I am, to the extent of being able to control my emotions outwardly. I took the news as normally as possible – showing concern, but able to hide the panic. Reading pages after pages on his condition and internalising all the good and bad scenarios. I managed to harden myself to the extent of being able to talk about it without losing composure. I told a few friends/colleagues – but I opened my mouth only when the instinct to break down had been pushed down to the depths of my stomach. I can proudly say that I managed to explain his condition as objectively as possible. The discussions with the neurologist were kept as matter of fact as possible – even humourous.

 

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But grief has a way of coming out. You hold it tightly at one end, it will slip out from another. I remember watching Dunkirk and realized I was crying – it had nothing to do with the movie. Sometime on a plane – watching Hello Zindagi, I discovered my face was all teared up. I can’t remember the number of times I have cried sitting in the backseat of my car, safe in the knowledge that my driver doesn’t have eyes in his head. But I learnt to let the tears flow. They needed to come out, for us to be able to move ahead and plan for Anvay’s recovery, with a clear head.

Anvay was 6 months old (corrected age 4 months), when his pediatrician said that his muscle tone is high. It made no sense to me. He then went on to say something about spasticity – which rang a bell in my mind. Spastic? Does that not mean mentally retarded? (it does not) I was immediately horrified and the image of a helpless, mentally retarded child went through my mind. And laughably, one of my thoughts was whether he would ‘look’ normal. That, really is the least of my concerns.

Once we got the MRI done, we got a confirmed diagnosis of PVL – a form of white matter damage in the brain. Our pediatrician (he is a great guy) told us not to worry. He had seen many cases, where children with PVL after initial years of struggle went on to lead perfectly normal lives. Though he was concerned about his CVI – which is a visual impairment where the eyes can see but the brain cannot perceive. But when we found out that Anvay was also having seizures, also known as infantile spasms, he sounded pessimistic for the first time. And that I think also finally sagged my spirits.

However, there is hope. His spasms seem to have been mild and were treated within one month. They have not recurred since and we have our fingers crossed till he turns two. He is improving – albeit slowly – but that is expected. He is rolling now, holding things in his hand and the other day, he ate a biscuit on his own. Every little step he takes is a cause for great happiness. He is a very happy baby and has the loveliest smile – it makes our day when he smiles at us. His naughty little personality has also started to shine through!

I talked about our dreams crashing. But I had also started the new year with a new hope. We are rebuilding our dreams. I believe in the human spirit – that it can rise up to any challenge and overcome it. I am sure Anvay and we will find a way. If one door closes, there are many others waiting to open – we just need to be willing to look for them…

Anvay IS my perfect child – as different and as unique as my other two….

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78 thoughts on “Grieving the Loss of the Perfect Child”

  1. Wonderfully written Sakshi. You are a very brave person, very stoic and very bold. The tears are bound to come, let them flow. And Anvay will improve. Be patient. He has the most adorable smile in the world.

  2. I too went through the grief of the loss of what I thought would be my perfect child. Ava was born without a great deal of her frontal lobes, and non of this was known until about 6 hours after her birth. The anger, denial, grief, rolled into post partum depression was earth shattering. I went through my maternity leave pushing her in a stroller as people cooed over my beautiful “perfect” baby girl. I decided at that point that denial was my friend, and i treated her as “perfect” and choose to believe that despite what all the doctors said, that she would be able to do whatever a “normal” baby would. I believed that until she did…and continues to do 14 years later. Let me add that as I type this I sit across from her working on a 7th grade science project. In simple terms…believe in your child. He will surpass all your expectations and be a constant source of amazement and joy. You sound amazingly more stable than I was, so I believe you have this in the bag. XO my friend.

    1. Thank you so much for sharing this. I really needed to hear it. From where I am, it sounds like a dream come true! Thanks again.

  3. Very nicely written……Anvay is going to be fine…..I have faith in God….You are a very strong person.I know because I’m a mother too and I wish you all the good things in life and may God bless all.

  4. Sakshi, it’s a very brave piece of writing… You have summed up months of grief, fear, hope and love in a page… I can only imagine the countless hours it has taken you to reach here… That’s what parents’ love is… It can withstand anything and do magic…it’s not easy, who knows it better than you… Though it certainly is worth each moment… Loads of love

  5. A mother like you is the biggest strength our adorable “triple A” have!! Anvay will lead a much better than normal life because he has parents like you two! You vent out your anxiety as beautifully as you handle the toughest situations!! Looking at the positive side, Anvay has the strongest parents, adequate medical facilities, lots of love from family…. He is a fighter and will sail through! Lots of love to you all 💕

  6. Sakshi- with such a loving family, and blessings from God, Anvay will get better fast. Just trust in God.

  7. Your strength and your words will be inspiration for many. Only Hope and determination, if nurtured well, can make a life worthwhile. Keep going!!

  8. This is a wonderfully written blog Sakshi.
    I am sure Anvay will be as strong and amazing as his mother.

  9. Anvay is for sure PERFECT! And so are you – not just [erect, but a super woman. Your spirit is amazing and I have so much to learn from you. Such a beautifully written blog – full of positivity – you and Anvay will smile reading it together in a few years 🙂

  10. Sakshi – I fully understand your feeling – I have a CP (cerebral palsy) child, daughter, who would have been fully ‘normal’ had the doctor at her birth not ‘forgotten to make her cry’ – a man made error which changed our life. My husband was in the Army – and he had to stay in field areas like Leh, Kargil, Joshimath etc for long spells so that I could stay in Delhi for her rehabilitation. There have been times when I have had to tie her on my back with my dupatta to prevent her falling of the scooter that we used to commute by.
    In the beginning it was – why us – but then there was no time to brood – as soon as we got know of her condition which was when she was a year old, we got going, making her exercise to get her on her feet. When she was 14 years old I was introduced to a lady who was the Director of a Special school in Secunderbad – there went our daughter when she was not even able to indicate her need to use the washroom – the school helped teach her that and she has been there for the last 26 years – has come a long way from what she was when she went to this school (group home school).
    Our involvement with her was all day long, so caught-up we were in making her independent – that we did not even get a moment to grieve the loss of our second child, born after a gap of six years of our daughter’s birth.
    Today our daughter has become a smart lady, interested in clothes, loves meeting people, makes friends very easily, ever smiling – she fills our life with happiness and we look forward to her spending her school vacations with us.
    I am sure that as time passes Anvay will improve – patience, persistence to not let go and faith in God will sure go a long way………. you have gotten to know of the condition early which is a great plus …….wish you all the best……….

    1. Thank you SO much for writing this. You have been so brave! I have a lot to learn from you. And I didn’t know about another child…it broke my heart once more…

  11. Sakshi, you poured your heart out with these words and i must say I admire the positivity and the strength in you. I am very sure Anvay will have a wonderful life and will be your strength.

  12. How beautifully said and processed. Grief seems a familiar territory for you recently, and I can see how wonderfully you are containing it and yet talking about it.

    Writing about your emotions is a beautiful way to say things and you are clearly great with your communication through this route.

    Being strong is not always about being objective and sometimes we can allow ourselves to feel loudly and childishly. It will ultimately be your strength, just as so many others.

    Best of luck to you and your beautiful little baby boy!

  13. Hello babhi u express ur view practically in this blog. Anvay is champion he fought with all stages our best wishes with dear Anvay….. Love to 3A That is Arnav Abeer and dear Anvay…… U and dada are proud parent with wishes..
    Nidhi

  14. Am speechless..but I do believe that Anvay is recovering and he will grow to a handsome young boy. Really loved what you wrote and I am totally touched. God bless the boys …you ate a lucky woman blessed with three beautiful gifts from the Lord…keep smiling…the God is in control…

  15. I am super sure Anvay shall amaze you with his superb ability one day… ur a great parent and ur greatness shall surely percolate down to all your kids… loads of love and blessings to him.

  16. Theres nothing in my life that will validate the statement “i know what it feels”,no parent will ever who has medically termed able kids.Sarat and Archana have been the greatest,most matter of fact parents I ve ever met raising a differently abled child in the most non differentiating manner.you seem to come from the same mould.

  17. Sakshi didnt know anything about this. I remember the meeting we had at NRLM and you were as composed. With a strong mother like you, I am sure Anvay will pull through and lead a happy life. Lots of love and let God’s miracle play out.

  18. Loads of love to Anvay. May the world fall on his feet and the sky bow down – and I am sure it will. Loads of wishes. Though a strong mother like you needs none…the dude is covered and how wonderfully at that. Way to go Sakshi.

  19. Sakshi,

    I have learnt from you that the strength to face a situation comes the moment we are faced with a tough one. I am glad I know you.

  20. Dear Sakshi, i hardly get any internet ,so havent been able to read most of what u have been writing but u guys r alwys dere in my thoughts n prayers. Cant even begin to tell u how admirable n inspiring u guys r. Lots of love to all ur family.

  21. It’s amazing to see how you always remain so calm and composed in person despite having to look after 3 kids. You are indeed very strong. Anvay will definitely be the perfect child. My prayers and wishes are with him.

  22. Sakshi, you are an inspiration to many. Bravo. Your blog gives a chance to know more of you. You have been through a lot, but handled it so well. I loved reading all your blogs. Avid writer. Some day I hope these blogs will transform into an interesting story.

    By the way, I tried commenting on the blog two weeks back while commuting and suddenly everything disappeared.
    Best wished to each member in the family

  23. Dear Shakshi, I come to know about your baby. Actually, I’m also in the same boat with you. My son Shaurya (4 years) has recently been diagnosed with CVI. The doctors say it is irrecoverable. Now I can see bursting all my dreams I had made for him. He is going to school, doing very well in oral skills, but can’t write. He is also having some behavioral issues and hyperactivity. He is being given OT, but not progressing at all. I am very much worried whether he will be as NORMAL or the doctors’ words come true?

    1. Hi Roshan, Thanks for writing. First of all, don’t worry – CVI as a condition can be improved through therapy. Also please note, not many doctors really know much about CVI – not even in the west. I suggest you contact Dr. Niranjan Pehere at LVPEI, Vijaywada. Where are you based?

  24. Beautiful babies and I am sorry for everything he and your family have endured emotionally and physically. He is still the perfect child in my eyes. Just a strong little man.

  25. This is beautifully written. You are strong and inspirational. Wonderful mother I pray that everything workworks out. We never want anything at all that happened to our children

  26. When I started reading I was imagining the two kids running around your home! The giggles and laughs happening in fact I lived the moment of joy through your writing when you said about the marriage I laughed out loud imagining these Aas in suit😜 then when I moved on I started crying! Before saying things I am sending a big virtual hug to you and sending positive thoughts and prayers! Your cute baby will be fine and with almighty z grace your dream where all the 3 boys in the marriage of the elder one will come true as this wish is from a mother! Please do update us regarding his positives in health!

  27. You are so brave and I can so much relate to it as gone through worse situation but feel God always blessed us with his love and blessings!!

  28. Sakshi never loose hope, keep sending positive thoughts to the universe , I am sure it will reciprocate with good health to your child.

  29. Very well-written. You are a very strong, brave-hearted person. My heart and prayers go out to him. He will surely recover and make you proud.

  30. I can’t even imagine what you have gone through. I was crying as I read this and realised if its so emotionally tough just reading it, then the heartache you must have experienced is unimaginable. I am blown away by your strength and fortitude and respect the fact that you have shared your journey in such a open and transparent way. It’ll be of immense help to other parents going through the same! More power to you mama!

    1. thank you so much shubhreet. Indeed the pain is immense – but sharing helps – and if it helps other parents like me – my purpose is fulfilled.

  31. I cannot fathom the pain you must have gone through but kudos to your strength and positivity. It is so hard to share what you have and i admire you a tad bit more for sharing such a difficult phase of your life here.

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