Our journey #hopingLife#letthemgrow#


9/10/13 – Two years ago I first heard the word Duchenne – that changes my life, our life and has changed Ryo’s life too. I never thought there could be just one moment in life that changes everything – I always read, yes instances do happen and your life changes, I never believed..but indeed it did. Still the day remain fresh on my mind and probably it’s an unforgettable moment in anyones life.

Have walked two years with duchenne in our life and will be for rest of my life. Things have changed in these two years, from being in pain and being in denial – acceptance and fighting for it is the way forward we have chosen. We have hope!

Living each day and giving him whatever I can is the aim of our life. All occasions, all festivals. All birthdays are double the joy – celebrating the joy that he is in our life, celebrating the joy that he loves us, celebrating the joy that he loves celebrations, celebrating the joy that God has chosen us to be his parents.

Ryo loves festivals, he loves birthdays, he loves songs and dance. He just loves to be happy all the time – I believe all kids do but I love to see the spark in his eyes for all the occasions. He is as excited on anyone birthday as he would be on his own! I love him so very much.


Cards in making!

This month has been busy for my little one. I decided to send birthday cards to as many duchenne boys as I can, just to give an extra wish, an extra smile and an extra dose of happiness on their birthdays. I decided to do this and my little helper is actually doing this.


He is super excited and super happy doing these. He is writing these cards and very happily decorating them. I’m very happy doing this – joy of giving! I know how much I like getting cards on mu birthday and I know Ryo would love it too so why not send the cards to these boys!

Ryo asked me any times is last few week about who us going to get this card. I simply told him that you don’t know them but you are just sending across some good wishes to them. He curiously asked me, so tell me mom – who is going to get this cards. I told him, little boys like you!


I’m so proud of him – the way he is going it and asking me everytime – how does it look mommy?



Keeping himself busy!


He knows very well how to keep himself busy where ever he goes. We took him to urgent care today as he dint look really well this morning, waiting and getting bored made him show off his creativity. He loves talking about imaginary friends – they go with everywhere, sit around him, eat with him, take shower with him and sleep with him.

He made sure that nurse knew that his friends are around and introduced Peppa pig, Alexander pig, Richard rabbit, Suzy sheep, Candy cat, Pedro pony, Emily elephant and Madam Gazelle to her, he made sure that his friends get proper attention! He was trying to doodle all his friends and by the time he finished there were many more!

I love him for all his sweetness and the little stuff he does that keeps him busy day and night!

#letthemgrow #peppapig#hopingLife

Unlucky or lucky?

This has been going on my mind for sometime and finally i could put it together. I’m in no way offencing anyone or mean to hurt anyone.

Who dosent want a perfect family? A perfect child and a perfect life? Everyone does but if something out of this falls in another category, do you leave this perfect domain?

I keep reading everywhere in many groups that you are lucky because you have a healthy child, baby gender should be anything but he or she should be healthy, may god bless you with a a healthy child, you should be happy that you have a healthy child..etcetera

Ok, I’m not a mother of a healthy child and my son has been diagnosed with a life threatening condition and unfortunately there is no cure till date and I know his life expectancy unless we find a cure and save him –  so am I unlucky? and that implies that I’ve not been blessed rightly by the God?

Yes, undoubtedly every kid should be healthy and it’s a bliss to see your child growing like any other normal child would grow. But what if God has other plans for us and you have been blessed with a special child? Reading this makes you perceive that you are unlucky and you are not blessed and you don’t ought to be happy – why? Why is there such a taboo with special children? Why when we see a audistic child, particularly in India, most of the times people turn around and keep staring. Why do people keep looking at someone who is on wheel chair. No one wanted that, no one deserves that but it happens. And if it happens then why isn’t it accepted with a full heart. Why do poeple feel reticent talking about the special conditions of their child and why do they hide. Yes, it took me time as well to share even with family because I was in a state of denial.

There isn’t really an answer to it, but acceptance and walking with it, using the right words probably could lead to a solution. When ever I’m in a online group or even one to one, and I’m reading comments about a healthy child, almost every other comment says you are lucky to have a healthy child. It brings to question me and my inner self time and again, oh am I unlucky? And probably it’s not only me, there would be many more mothers who can relate to this.

No, I m not unlucky! I don’t have a healthy one but im still very lucky because he is a part of my life. He is indeed my life and im glad that God has chosen me to be his mother. I don’t know what the future hold but I live with one day at a time – literally one day at a time and for us each day has to be four times special and each of his birthday has to be four times special for him to live and experience life. With each birthday i feel, i wish i could stop time! I’ve to do all efforts to make him as successful as he can, make him learn as much as he can inspite of a fear in heart. I have to make him fight.

I’m lucky to have a child irrespective of the fact that he is healthy or not – no mother would ever himself consider unlucky just because she has a special child! Atleast I would not! I wish people write that consider yourself lucky because you are a mother! I’m a mother, a mommy, a maa and im very lucky because  I’m blessed with a two little feet in my home! And yes I’ve a perfect family and my son is perfect in all the ways he can be, just because he has a life threatening condition dosent make our family imperfect!

I would still have chosen you
– Terri banish

If before you were born, I could have gone to heaven and saw all the beautiful souls
I would still have chosen you

If God had told me,”This soul would one day need extra care and needs”
I would still have chosen you

If He would have told me,”This soul may make your heart bleed”
I would still have chosen you

If He had told me,”This soul will make you question the depth of your faith”
I would still have chosen you

If He had told me,”This soul may one day witness overbearing suffering”
I would still have chosen you

If He had told me,”All that you know to be normal will drastically change”
I would still have chosen you

Ofcourse I know, I would still have chosen you, it was God who chose me for you.


I wish!

I wish I could freeze the time and see you like this forever..
And not blink my eyes ever…

I love you for what you do and how you make me smile every second…
I love how you love me..
I love how you say sorry..
I love how you make me laugh…
I love you for everything that you do!

The little fingers always doodle…

I say no and then I feel
Little hands love to splash
I say no and then i feel
Little fingers love to doodle
I say no and then I feel
Little mind is at work

I feel and I let you do
What u desire what u crave
No feeling untouched in your heart shall remain
No desire left in between shall remain

May you do what u desire…
May you do what you feel…

The little hands always splash
The little fingers always doodle
The little mind goes more imaginative

May you do what you desire…
May you do what you feel…

Day 01 of Vacation bible school

BUILD yourselves up in
YOUR most holy FAITH
Let the Holy Spirit guide
And help you
When you PRAY!

Jude 1:20


It was a great begining today, Ryo after two weeks of break was excited to be a part of vbs, totally unaware what’s going to happen there! I was advised by few friends to register him for vbs as its fun and they get a break too – the best was the theme – Lego!!

He did cry when we dropped him and wanted to go back. I made him sit there and then was sneaking through the hall door for sometime. He passed by and saw me sneaking and said bye and  didn’t even turn around after that- that was the commencement of his awesome week ahead!

He was back home happy and enthusiastic for tomorrow!!



Take me out to the ocean…

Take me out to the ocean…
Take me out to the sea…
There goes a starfish and sand dollar,
I’m having such fun, I’ve just got to holler
Oh, it’s swim, swim, swim, underwater
Catch a ride on a whale, don’t fear,
For the sea animals are our friends,
Let’s give a great big cheer!

First road trip in the US and the little boy is excited!! He couldn’t decide where he wanted to go for a vacations – one day it was beach and another day it was mountains – and then he said, ‘I want to go to China!’ Yeah, my little boy wants to go to China to see the Great Wall 🙂

Finally, he made a distinct point that it has to be beach. Lot of shopping done and he is all set and too enthusiastic. He has been to beach few times before but I think age plays a big role. He think he is a big boy now, can make big castles, do canoeing – which he couldn’t do earlier. So with lots of breaks and food on our way, I’m waiting to see how he reacts when we get there and hoping he does everything that he wants to do. Accompanying him is his fried Simba!

China is on our list now, if he desire even when he grows up! 🙂

Breaks and fun and food#2015Summervacation


Bike day!

So finally he made it to be a part of Bike day at school! He really enjoyed, even though I asked him to rest after few rounds but I’m glad that he was part of the event !




A little boy and a yellow duck!!

Today was our MDA walk, our first MDA walk – HopingLife and cure for my little boy and and all duchenne boys.

My little boy walked too and enjoyed there! He got a yellow duck and a tattoo and ate a pizza slice, little games and then a little walk with the yellow duck- these series of events made his day! He didn’t know much about what was happening or why we were there, he just went with the flow, got little goodies and some candies and ofcourse a yellow duck and then joined us for the walk!

More than a walk, it is actually raising awareness and funds about Muscular Dystrophy and let people be aware about the rare life threatening conditions and support finding cure – this is what we need and this is what everyone needs! A cure, a life full of blessing for everyone. Its hard to imagine, that with all technology with us we are still away from finding a cure, but hope not for long- I hope my little contribution from my family and friends helps them find a cure!