The Days Go Slowly, The Years Fly By – yes, 2019 is already here

A very close friend used to say this. The days go slowly and the years fly by. So true. It is amazing how every single year, as we approach December, we start to wonder how quickly that year passed, exactly like the ones before this one. Even my eight year old seems to have now become mindful of the passage of time – this time he exclaimed how short 2018 seemed to be. It is one of the blessings of very early childhood when we have no sense of time. After that, life just seems to rush by.

A new year is a time to reflect on the past and look forward to the future. To be honest though – I wasn’t really into much reflecting, till a year or so ago. Either it is old age catching up or just that these last few years have been so densely packed with incidents and emotions that reflection comes naturally.

I had welcomed 2018 with a hope. Having had two difficult years, I was hoping 2018 would be better. But if only wishes were horses…. No sooner had we stepped into 2018, I lost my dad. My being succumbed to the depth of its emotions, and even I was taken by surprise at the extent of my grief. However, I am slowly healing, we all are.

This year can perhaps best be described as my painstaking journey from the depths of despondency to tentative optimism. While I am yet to fully emerge in the sunlight, I can see the first specks of light beyond the dark tunnel I found myself in. A huge help in finding the way has been my writing. I started to blog at the beginning of 2018.

This was a huge step since I am a very private person – and sometimes even find it difficult to acknowledge my own feelings. The decision to blog, and to continue doing that was a significant U turn. So I wasn’t surprised when my sister said somewhat complainingly that I was more comfortable sharing my feelings with the world than her! (But sweetheart you know how much I love you!) Or when a new colleague told me that she didn’t know much about me, except of course my deepest feelings! I guess I have always been better at writing my feelings instead of saying them!

Blogging helped me in more ways than I had imagined. I had started my blog to share our experiences raising Anvay – to give hope and strength to some and in turn hear back from others in a similar situation. However, I soon realized I had much more to share, and how much I loved writing. In a way writing grounded me, provided me with an anchor that I held in the darkest of my moments.

It also introduced me to a different world – of writers. I met new people, attended some writing workshops, made new friends. I am a novice in this field – and it really made a refreshing difference to meet such talented people from a world very different from my own.

Along this road I also discovered Momspresso – a platform that allowed me to share my blogs with many more people. I was able to reach lakhs of readers and the momspresso editorial team was very kind in choosing me as one of their top bloggers of the year and giving me an opportunity to read my blog live to their members. The love and encouragement I received was truly motivating.

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And all of you, every single one of you have been important for this journey. There are so many of you who have read each of my blogs, took the time to comment or share. This encouragement matters the world to me. I have been humbled when some of what I felt rang true for you too – several people responded to my blogs about my father – how they shared my pain of losing a parent. A lot of you responded to my blogs on Anvay – some of you shared similar stories – stories of hope, many of you sent prayers. Just knowing that so many of you are with us and care for us was more than enough to give me the energy to continue moving.

While in writing I found an anchor, my work has always been my mainstay, my foundation. Towards the second half of this year, I got the opportunity to work in Central Asian countries. While it was an exciting opportunity, it also meant significant amount of travel. We thought over it and decided that we will manage. Armed with extra support from my mum and spouse and 2 full time helps, the family took the significant decision to take up this challenge. And before I could realise, I was travelling 10-12 days a month. The experience was exhilarating and very very enriching. (more about it in future blogs) It also meant that I did not have much time to dwell on anything besides managing work and family and played a huge role in stabilizing my emotions.

On the whole, 2018 has been a harbinger of change. There have been big shifts and small changes; a big loss and a certain level of triumph over emotions. My blogs perhaps tell the story of the entire year very well and it is only fitting to try and summarise the year through them. The twins are two now and Abeer has reached the next level of brattiness (don’t think that’s a real word – but fits)! Anvay is progressing well and his naughty little personality has started to shine through! His smile makes our day and now we are hoping that he starts to at least stand by the end of 2019! I am more or less at peace with his condition and understanding life much better through this lens. We continue our experiments with our first born – and this year Arnav seems to have become more mature and quite a geek – likes to read anything to do with geography or science – including biology and quantum physics! (he has informed us that the male body’s main purpose is fertilization – though he is still not sure how fertilization actually occurs.). Time to plan his 9th birthday – likely theme is science, no surprises there.

My pregnant tummy hasn’t gone anywhere (obviously, since I have done absolutely nothing about it) – and I am wondering maybe tummy tuck is my redemption? My soulmate however happily lives through the THICK and thin – and maybe secretly happier that I am more like his shape now!! Well that aside, the maid situation has improved and just before I started to travel, I managed to get two good domestic helps – and the sense of peace that brings is more than perhaps meditation could!

 

2018 has been a kaleidoscope of events and my biggest take away probably is that when you have your family and friends rooting for you, supporting you, you can overcome anything. I have an immensely supportive family starting with my husband and mum (and dad), always standing rock solid behind me. As also are my mother and father in law – ready to step in whenever required and a very loving extended family – both from Kapil’s and my sides. A supportive workplace and colleagues are my added blessings. And with all of you added to my family now – world is a happier place! Love and hugs to all of you. So a happy me welcomes 2019 and looks forward to it! 

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My Special Needs Baby – My Inspiration

If you have been following my blog or know me personally, then you will know that my littlest baby Anvay has special needs. What this means is that his pace of growth is much slower than the typical child and we also don’t know yet how independent will he become. Needless to say, any parent would be devastated to hear that their child has special needs. So was I. One year ago, we found out about his condition, and since then I have come a long way. I wrote about my grief earlier this year. You read it and you sent your support. And I realized that lessened my pain. It helped me deal with my feelings. It helped me accept and acceptance helped me focus on the future. The future of my baby. So thank you for your support and your wishes.

Today, about a year after the diagnosis, I am glad that I am a better person, a stronger person and a somewhat happier person. And in that mental transformation, my baby has been my inspiration. He has helped me face one of my worst fears and has shown me that faith and hope are an essential ingredient to leading one’s life. I have also learnt from his sheer grit, his patience and his ability to smile in pain. Today I want to share some of what I have learnt with you.

Aside from losing a loved one, the greatest fear I had was having a baby with special needs. I thought I would never be able to handle it either emotionally or physically. I felt I was not strong enough. But I have realized now that the strength to handle anything is within us. When faced with a situation, we need to look deep within us, and we will find that we are already armed. I learnt that when you face your biggest fear and look it in the eye – it diminishes and gives way.

Once I accepted Anvay’s condition, I found hope and faith to be my best allies. In his condition, there is no cure but through regular therapy many babies start functioning normally as they grow up. But no doctor or therapist could tell us what to expect as Anvay grows up. Will he be able to walk? Maybe. Will he be intellectually disabled? We don’t know yet. What about his eyesight? Might improve. When there are no clear answers, Faith is the only thing that makes you go on. The faith that my baby will also progress and become independent and perhaps read this blog one day. And Hope is faith’s best friend in this journey.

One of the conditions that Anvay has due to his brain injury is spasticity. It basically means that his muscles tend to pull back inwards and his limbs remain tight. Diapering him is not always easy because his legs don’t open up properly. For many months after he was born, his fists were often clenched. This is due to his spasticity. And spasticity can be painful. If you try moving around with clenched arms and legs you would know what I mean. He used to cry a lot during his early days and we realized after his diagnosis that a large part of this must be due to the spasticity. Through therapy he has improved now, but it still hurts him and he cries. And each time I hold him, console him, he smiles. He smiles despite his pain and tries to stop crying. He is just 20 months old and he teaches me to smile through my pain and move on. By the way he has a sunshine smile and any advertisers out there should seriously consider him for their shoots! (P.S. it will also help you spread awareness about special needs children)

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And with that smile come his grit and his patience. The part of his brain that was injured transmits the messages from the body to the brain. The reason he is not able to sit up is because his brain is unable to tell his body to get up. But he tries. And he keeps trying. These days he is trying to lift himself up on his fours. He pushes himself single mindedly till he is tired. He fails and he fails again and then he pushes himself once more. And he screams with the effort. Think of a weightlifter lifting a heavy load and his grunts from effort and pain. I feel ashamed at how easily I sometimes give up after a dose of failure.

But the more difficult something is, greater is the happiness in its achievement. Every bit of the progress Anvay makes, brings us ten times the happiness. It reminds us of the effort that went in. It also reminds me to not take anything for granted. I cannot take for granted the fact that I can think and walk and talk. But for a few seconds of lack of oxygen, Anvay would have been like us. Those few seconds of oxygen, is what we should all perhaps be grateful for.

I mentioned above that the communication pathways in Anvay’s brain have been damaged. So how is he overcoming that problem? When I understood how, I found two important lessons – both philosophical and scientific. Through therapy and his own efforts, Anvay’s brain is trying to rewire itself. In science this is known as neuroplasticitythe ability of the brain to change throughout its life by forming new connections. This has a lot of significance for all of us. It means that even as the brain ages, we can continue to learn and the more we use these connections, the sharper our brains become.

At a different level – what this means is that – when one route closes, we need to find another way. It will be tough, it will be challenging, but we should be sure that another way exists. If it doesn’t we can forge our own path. When a door closes on us, we know there will be many others to choose from – if only we stay focused and look hard.

Finally and perhaps the most important lesson I have learnt is that we all live at our own pace. I will be honest and say that it pains me to see the increasing gap between Abeer’s and Anvay’s abilities. But I am learning to ignore that gap. I am learning to compare Anvay’s progress only against himself. I believe he will make his own way, with whatever he gets or does not in life. His life will have meaning and we will find it. I will consciously avoid comparing him with how a typical kid would grow. I also try to stop feeling cheated about the deal Anvay got. This is what we have and this is what we will live. In the best way possible. And ultimately, all we need to be is happy. That is the one single goal we need to strive for – whatever our pace.BLOG- MY ESP NEEDS BABY- 2450x800

Lastly, for those who would like to know – Anvay has been improving – slowly but steadily. He is able to roll over – he sits up without support for a few minutes, he is focusing better, he is able to creep a little and also pull himself up with some support. So please add him in your prayers and send us your love – from wherever you are. And I will keep updating with our progress.