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.

71 thoughts on “My Special Needs Baby – My Inspiration”

  1. Sakshi this blog was both poignant and uplifting. It is a journey from despair to hope which you have described so well. You are a very strong person. It is wonderful to know that Anvay is progressing. Every small step is a giant leap for him, cliched but true. As his brain continues to rewire itself, there will be more improvement. Anvay is always in my prayers. And your boldness, resilience and fortitude will inspire other mothers whose children have special needs. With all the leaps modern science is making, I am sure there will be a medical breakthrough for Anvay, in the years to come.

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    1. Thanks a lot Vandana mausi – your words really encourage. Please do share – I would really want this to reach other parents – especially of special needs children.

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  2. Amazing write up! Best one till date!
    Sakshi, Anvay is inspirational in every sense of the word but somewhere, I’m taking inspiration from You!
    Love you Babes!
    Yes, Anvay and your entire family will be a part of my prayers always!

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  3. Stay strong, Sakshi!! Anvay is your strength!! Love his smile.. He is always in our prayers. Lots of love to you and your triple A!

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  4. I would like to believe this write-up is the most inspirational one of all your write-ups. I think almost all the lines have some inspiration for everyone reading the blog.
    The one that has stuck with me most is the paragraph where you have mentioned “It also reminds me to not take anything for granted”. My belief is this is what would give Anvay an edge over most of the boys of his age coz he will not take anything for granted and thereon will he slowly realize his purpose which I would bet will happen again much before any boy of his age!!
    Our genes are “wired” to fight out all kinds of adversaries and Anvay is definitely an embodiment of what we can achieve!!
    I will wait for the day when Anvay reads this blog and feels so so proud of her Mummy!!

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  5. Heartening write up Sakshi. You and Anvay are so inspiring….. Was amazed while reading your blog and felt pretty small at the time. There is so much that I would like to say and yet nothing. What you have said about faith and hope is so true. And they do work. Would just like you to know that your family is always in my prayers.

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  6. An excellent write up .It amply and appropriately takes the reader along with the agony and fighting spirit of the child as well as the mother.

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  7. Mam, your blogs are awesome read, you bring your heart in to your words and it feels the same while reading! God bless and Keep going! More powers to you!

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  8. It’s wonderful how far you have come. Your hope for Anvay will make sure he reaches new milestones… just as he has in the past one year.

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  9. God bless him! Really appreciate your perspective Sakshi!! Indeed, there is something to learn and we should not give up so easily and look hard to find new doors and new connections. Love to the kids!!

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  10. Hey Sakshi! I can only imagine the strength it must have taken you to come this far…and even to write this so honestly. I can imagine how many times you must have felt overwhelmed, afraid and nervous… But that you choose to stay strong and positive….even trying to help others through similar situations… It’s so beautiful. Anvay will, God willing, stay relilient and find his destiny…. You are both in my heart…in my prayers

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  11. What a special little boy!! I feel as though I’m reading about my grandson. I know how you feel our grandson brings so much joy and love in our lives he is just the sweetest little baby just like your son is to you. God bless you and your little boy. I really enjoyed reading your post. These children really are special and hold a special place in our hearts ♥️

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  12. Wishing Anvay a Happy life. Surely it will have some struggle but who knows his struggle is bigger or ours. I am sure you and Kapil will help him to be Happy and satisfied. Our wishes are always with him….!

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  13. Thanks for sharing this Sakshi. Anvay is a fighter and has got parents with a great attitude. Wishing him a happy life ahead! Your blogs are inspiring. Keep writing and sharing..

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  14. Beautifully written and so relevant to all of us who take things for granted. We forget all the little miracles, thank you for bringing some perspective to life.

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  15. You’ve got an amazing rockstar happy kid. Look at the twinkle in his eyes when he smiles 😀 I love happy people..he is special indeed but not cause of his needs because he is a happy jovial person. Kudos to you for having the strength to not get bogged down and other moms will also take a cue by reading what you’ve shared here. Ultimately it’s about good parenting and unconditional love.

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  16. You are one strong mama! It’s always a mon’s worst fear to have a child who needs additional care, but you have shown strength in the face of his condition to be the best mom he could hope for.

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  17. Plays so I loved this post. It touched me on a personal level as a person who has spent ten years working with special needs children. I have worked with children like your son while working at an equestrian therapeutic riding center! Through that work I have children who’s parents were told their child would never walk, start walking thanks to the program. I loved how you were so honest in this post about how you felt after the initial diagnosis, and how you grew through it. You are doing a fabulous job honey. Keep it up!!

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  18. I’m a new reader and I have to say, you have a beautiful little boy! You make some wonderful points about appreciating all the gifts that we each have. He’s such an inspiration and I’m really happy to hear that he’s improving. He’s lucky to have a strong family that celebrates his wins, works around his limitations, and pushes to give him the fullest life possible. ❤

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  19. So sweet… I am praying that he continues to make progress in everything he attempts. I have siblings with disabilities and their determination and spirit is something to be admired, much like your son!. Sending love to you both!

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  20. Hello 🙂 I have been sitting on your page now for the better part of an hour. Sorry for lurking but your article inspired me to share. I am the mother of a special needs daughter. I was pregnant with twins when we found out that one was going to possibly have brain damage due to hydrocephalus. There was a surgery that we could opt for that would have given her a 50-50 chance but there was the potential that we could lose her and the other twin. We had to make a decision quickly and I spent hours in a library and talking with my husband. we had to choose and it was absolutely the hardest decision we have ever had to make in our lives. Medical science was asking us 22 years ago to play God. I prayed and I asked for guidance and the only thing that came to me was that we were not God and that I was to leave the outcome in his hands. We chose to not do the surgery. We have two healthy daughters and one is severely learning disabled. Beth is a remarkable child and brings happiness into every life that she touches. I left your page to write about her and then realized that I had a letter from years ago that my daughter had written about Beth. I want to share it with you. https://ourfoursuitcases.wixsite.com/our4suitcases/sisters-a-special-relationship

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  21. Very touching narrative..your heart is in what you have penned…emotions do well conveyed ….special child has his own needs and will do everything at his own pace..patience and perseverance is required…
    Touched my heart.
    God bless you all.

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  22. God bless you and your family. Thank you for sharing your family’s strength. Every family has it challenges, but it takes strong people to endure heavy things and continue to move forward. You are a blessing.

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  23. What an inspiring story. Living with a child that has special needs is not easy, but it can be very rewarding. I wish you and your family joy and love even through challenging times.

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  24. Hugs to you and kisses to your 3 little boys. You are truly an inspiration, stay strong and positive as good things are about to happen. Sending all the good wishes to you 🙂

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  25. Thanks for sharing your feelings Sakshi, it is indeed inspiring, you are blessed you love Anvay, enjoy his progress.
    After loosing my husband, the only thing I respect and value is life. So celebrate life with your little one. Stay blessed – Hema

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  26. Thanks for sharing Sakshi. Keep being the best parents you can be, he is receiving and recognizing the love (in his own way) you have for him. You have been blessed with him for a purpose. Trust his life into God’s hands. Will keep praying for his healing and physical improvements. Blessings to you.

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  27. Our prayers for your son to have a healthy happy life.
    Your writeups are very engaging and realistic. Great effort and best wishes.

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  28. This is such an inspirational and heartfelt post. Keep strong Mama, you can meet this with the same grit and patience as your little boy ❤

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  29. He is so beautiful. May he grow up to be beautiful. May God bless him. This is such an inspiration for all of us. My baby is also special needs and it gives me hope and strength to read this. May God bless you n your family.

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