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)

anvay 1

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.

… of Friends and Friendships, the Bonds of a Lifetime…

As Arnav and I browsed through the various friendship bands for his friends, I was taken back in time, when I did the same with much excitement. I remembered how the larger part of our day was spent with friends. A luxury we lose as we grow up. With a hectic work life and weekends devoted to household chores, unfortunately friends and friendship seem to have taken a backseat.

But this friendship day seems to have come to me with a message. This morning I was pleasantly surprised to receive a friendship day message from a friend who managed to dig out a picture and a card I gave him years ago! Yesterday we spent a nice evening with some close friends catching up on our lives, sharing our stresses and just relaxing. We must have met after many months – this, despite the fact that we perhaps live within 10 kilometers of each other – which is considered close in a city like Delhi.

From being someone who loved to make friends, as many as possible (I was never able to decide who not to invite for my birthdays!), chatted long hours on the phone, had day spends and night outs with them, I am now a person whose interactions with the outside world are mainly dependent on Whatsapp and Facebook. Real conversations with friends are far and few between. And I am not alone in this. I know most of us are stuck between the home and the office. And those of us who are not – are lucky. Or maybe that’s being unfair to them. They are not lucky – they have made the conscious choice to make time for their friends and reach out.

BeFunky Collage3

But friendship is evergreen. No matter how much the distance or years between buddies, friendship always blossoms when friends meet. Our hearts do not know how old our bodies may have become, they instantly connect as the little children or teenagers we were when we met. A few months ago I met one of my school friends at her apartment and it was as if we had never been apart. The laughter flew as easily as it did in our classroom and after catching up we relished some of our school memories together. She and I spent a good part of our classroom time exploding into laughter or just doodling messages to each other. We did just that (except the doodling) when we met.

Or the time I met a college friend recently when I visited her city, nothing seemed to have changed since we last met. Or whenever I meet my best friend from school, our conversation always goes back to how we used to tease my husband (also a school friend!) and how the three of us had spent so much fun time together.

Like wine, friendship becomes better with age. I see that when I see my mum and her best friend together. They have been with each other through all stages of life and while their conversations have changed – from boys to husbands to children and grandchildren, their friendship has not. Recently mum was in Bombay for a month and she and her friend met almost everyday – except the last few days. It tickled my sister and I no end, when they both lamented about the days they couldn’t meet and how their conversations were still unfinished!

Last year when we went to the U.S. my mum met her school friend after more than 40 years! She brought along with her pictures of them together and those few hours were really precious. They had lost contact years ago and I remember that for years my mother had tried to trace her without luck. And apparently she had been trying to do the same. Social media finally came to the rescue when she managed to find her through Facebook!

BeFunky Collage 4

Talking about social media, I think it has played a very important role in bringing lost friends together. When I first joined Orkut (That’s what it was right?!), my biggest excitement was finding long lost friends from school and college! When my parents moved to Delhi, my dad was delighted to have traced many of his school and college friends through Facebook and they maintained contact through their Whatsapp groups, planning meet ups and excursions. Thanks to that we were able to gather a good number of his friends from school and college for his 70th birthday.

IMG-90

But friendship is not limited to friends. It is a bond that transcends all relationships. Our family shared a strong bond of friendship – our parents were our confidantes, our friends. They were the first people, my sister and I went to in times of need. There were no secrets between us. They were always there to guide and never to judge. My sister and I were very close – she was the one I opened up to – no one else was privy to my deepest thoughts.

IMG_4534

And then there are cousins – they are the friends with all the insider info! The special bond that comes from sharing the genes and being scolded by two mothers at the same time cannot be compared with any other! I absolutely adored my cousins and desperately waited for holidays so I could go meet them. My classmates got tired of hearing about them as holidays came near! And as I was falling in love, it was my cousin who was privy to my innermost feelings and who got to hear all about the last time I met HIM!

BeFunky Collage2

Many of you may know, that I married a school friend and I think we share a strong bond and mutual respect because of the years of friendship that preceded the romance. My sister also married a close friend of mine – and now the four of us share a bond that preceded our marriages. There will not be too many brothers-in-law who share such a strong relationship as these two do.

I feel very lucky to have found strong friendships at all stages of my life. And now as I grow older, I want to make sure they all continue to be with me. I know I have been busy and have not managed to keep up with all of them, but I promise to try more. And maybe so should you 🙂

Happy Friendship Day to you and call me when you can!!

BeFunky Collage 1