Friday, October 4, 2019

Let's bust some myths for October is Down syndrome awareness month

Dear readers,

October is Down syndrome awareness month and in honor of Laksh and other amazing people just like him, we are having a celebration on our Instagram page. 

When Laksh was born, I did find myself leaning on Dr. Google to help me find some facts about Down syndrome. Being a physical therapist, I was aware of what Down syndrome is but I had never come across anyone in real life who had DS until Laksh. I was so shocked to see some not so accurate and honestly antiquated information on there that it worried me. 

Some sites down right made DS look like a punishment for the child and his/her family, which it really is NOT. So I decided to start a social media page for Laksh so I could show people what it really looks like to have a child with Down syndrome in today's time.  On these platforms, I connected with so many amazing families who have been on this journey longer than we have and it has blown my mind. 

Everything that I wanted for my child, I can see it happening. It might take a bit longer, but who is in a rush anyway? Today, I would also like to take this opportunity to bust these myths I kept reading on different websites back in 2017. 

I am using yellow and blue as these colors represent Down syndrome awareness 

Myths vs  Facts

Most children with Down syndrome are born to older parents. 
Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the likelihood of having a child with Down syndrome increases with the age of the mother, especially after age 35  

All people with Down syndrome have a severe cognitive disability 
Most people with Down syndrome have a mild to moderate cognitive disability, or intellectual disability. This is not indicative of the many strengths and talents that each individual 

People with Down syndrome cannot be active members of their community. 
People with Down syndrome are active participants in educational, social and recreational activities. They are included in the typical education system and take part in sports, music, art programs and any other activities in the community. People with Down syndrome are valued members of their families and communities, and make meaningful contributions to society, and many are proud business owners. 

Scientists know everything there is to know about Down syndrome. 
Though we know that an extra full or partial copy of chromosome 21 causes the characteristics of Down syndrome, researchers are making great strides in identifying how individual genes on chromosome 21 affect a person with Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future 

Segregated special education programs are the only option for students with Down syndrome. 
Students with Down syndrome are included in typical academic classrooms in schools across the country. The current trend in education is for full inclusion in social and educational settings. Sometimes students with Down syndrome are included in specific courses, while in other situations students are fully included in the typical classroom for all subjects. Increasingly, individuals with Down syndrome graduate from high school with diplomas, and participate in post secondary academic and college programs 

Adults with Down syndrome are the same as children with Down syndrome. 
Adults with Down syndrome are not children, and should not be considered children. They enjoy activities and companionship with other adults, and have similar needs and feelings as their typical peers.

Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage 
People with Down syndrome socialize and have meaningful friendships. Some choose to date, maintain ongoing relationships and marry. 

It is ok to use the “r-word” if you don’t really mean it. 
It is never acceptable to use the word “retarded” in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent. 

Adults with Down syndrome are unemployable  
Businesses employ adults with Down syndrome for a variety of positions – in banks, corporations, hotels, hospitals, nursing homes, offices and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and the computer industry, to name a few. Like anybody else, people with Down syndrome want to have a job where their work will be valued.  

People with Down syndrome are always sick 
Though people with Down syndrome are at an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, and thyroid conditions, advances in health care and treatment of these conditions have allowed for most individuals with Down syndrome to lead healthy lives. 

Down syndrome is a rare disorder. 
Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome, or around 6,000 births per year. 

People with Down syndrome are always happy and affectionate. 
We are all individuals and people with Down syndrome are no different to anyone else in their character traits, varying moods, and ability to feel all kinds of emotions 

People with Down syndrome all look the same. 
There are certain physical characteristics that can occur. People with Down syndrome can have all of them or none. A person with Down syndrome will always look more like his or her close family than someone else with the condition. 

People with Down syndrome do not live very long 
Today, with the kind of medical treatments available, people with Down syndrome can look forward to living a long and fulfilling life 

Down syndrome is hereditary and runs in families.  
Translocation, a type of Down syndrome that accounts for 3 to 4% of all cases, is the only type of Down syndrome known to have a hereditary component. Of those, one third (or 1% of all cases of Down syndrome) are hereditary

I have used the National Down syndrome society as a guideline to create this list.

To show your support, you could wear yellow and/or blue anytime in the month of October or just any time at all, and tag us on Facebook or Instagram  using @livelifelakshsize or the hashtag #livelifelakshsize or #lakshandfriends

Leaving you guys with a video of my SUPER LAKSH in his TINY SUPERHEROES CAPE.

To be a part of Laksh's journey you can connect with us on:

And if you loved reading this or any other articles here, please do hit the follow button and share. Thank you

Monday, September 23, 2019

Are we all truly created equal?

Dear readers,

I saw part of a speech a fellow mama that inspired me to write this.

As parents of kids with different needs that the general folks, we have to take this position of being an advocate. We have to shout the worth of our kids beause sometimes society writes them off based on a diagnosis that’s only a small part of who they are. Parents of kids with typical needs are congratulated on the birth of their children whereas a lot of us are shown sympathy.

My family and I have always celebrated Laksh, even in those early days when we were unsure of how to navigate this journey we are put on. Ours kids have to start life with proving their worth at every single step, sometimes it could be as basic as their right to be born. Isn’t that a shame? No one should have to prove in utero that their life is worth something.

The children that are allowed (and I don’t use that word lightly) to be born then have to fight for inclusion at every step of their existence. They have to prove what other children might take for granted. I am not writing this to shame or call out anyone, I’m just writing this to create awareness, to start a conversation and to let the world know my Laksh is capable AF.

Our kids have to start life at a disadvantage and that isn’t the way make anyone feel like they belong. Imagine starting the race of life a mile behind everyone else and never being given the opportunities to catch up or even carve your own path. What is this race anyway? What happens if a child can’t walk till they are 2 or 3 or 5 or even just not  able to learn or master that skill? Isn’t it our job as a society to include and adapt according to the needs to the people living in it?

I’ll always shout the worth of my son and other like him and welcome you guys to be a part of this new better, kinder and welcoming world that includes every single one of us.

Lots of love,
Laksh’s Proud Mom

To be a part of Laksh's journey you can connect with us on:


Instgram: @livelifelakshsize


And if you loved reading this or any other articles here, please do hit the follow button and share. Thank you

Wednesday, September 4, 2019

Love and Kindness are never wasted

Love and kindness are never wasted.
They always make a difference.
 They bless the one who receives them, and they bless you, the giver.
- Barbara Se Angelis
One of my biggest fear is will people be kind to Laksh? 
Will people understand that just because he might need more time to understand or 
learn something new, doesn’t mean he can’t do that ever. 
I hope that people understand that he is curious about things and if given a chance, 
a true chance he will flourish. I hope people see in him all the mischief that I can and
 all the love that is clearly apparent.
I hope that people see what a talented 2 year old he is and
 that having #downsyndrome is just a part of his being. 
He also has a sense of humor, a contagious smile, a way of making mommy and daddy dance
 on his fingers, a will to learn and learn with zest, 
an ability to make you see world in a whole different way, 
an ability to see good in the world, 
an ability to excel when given proper guidance and motivation,
 a way of moving on from things that are not important in the grand scheme of things,
 an art of fake crying to get his way, and make friends with ease.
When I see him with all things parts attached to his personality, 
Down syndrome kind of stops being this overpowering thing people had made it out to be.
 Again, I don’t mean that it’s not tough at times but well that’s how life is.
 We can’t keep dwelling in that. 
Laksh is so much more that his diagnosis but you can see that only if you truly look.
Always be kind, it’s doesn’t take anything out of you but has the power of making or
 breaking someone.

To follow Laksh's journey you can connect with us on:
Instgram: @livelifelakshsize
Website: www.livelifelakshsize.comAnd if you loved reading this or any other articles here, please do hit the follow button and share. 
Thank you

Tuesday, August 27, 2019

The magic created by his extra chromosome or because it’s him.

Dear readers,

I understand that being a parent is a constant struggle between loving your child to death and wanting to pull off all your hair one by one, but what makes this journey worth all the frustration is this amazing child that calls you mom or dad. I am so lucky to have Laksh as my first born and I do not mean that because he has Down syndrome but because he is an amazing little boy. 

He loves with all his heart and I understand that could be due to the magic created by his extra chromosome or just because it’s him. He laughs easily and makes others laugh with him, and I understand that could be due to the magic created by his extra chromosome or just because it’s him. 

He is easy to forgive and move on, and I understand that could be due to the magic created by his extra chromosome or just because it’s him. He drives me insane with his shenanigans, and I understand that could be due to the magic created by his extra chromosome or just because it’s him. 

He is the kindest sweetest boy, and I understand that could be due to the magic created by his extra chromosome or just because it’s him. 

To follow Laksh's journey you can connect with us on:
Instgram: @livelifelakshsize
And if you loved reading this or any other articles here, please do hit the follow button and share. Thank you

Tuesday, August 13, 2019

My dear son

My heart is always worried for my son and his well being. I know that he has a long road ahead and life can be hard some times but all we can do is make sure to raise a child that is confident and believes in himself/herself. I am writing this open letter to him so when he grows up, he can read this and hopefully understand how much he is loved and valued. And how much for an amazingly brilliant person he is. Please read below.

My dear son,

I feel like everything in life happens for a reason, and my son you have been the greatest gift that God has given me. I’m doing my best to raise you to be strong, nurturing, loving, brave and self confident. I am shouting your worth everyday so people don’t limit you from being the best version of yourself and achieve your greatest potential. They say that parents are suppose to be teachers for their kids but you my darling Laksh have taught me and your daddy so much.

Joy comes from the places you least expect it, and for us it comes from simple things like watching you play with your favorite car or reading your favorite book. Laksh you are a huge inspiration for me and everyday I learn and grow as a human being just by being near you. That’s the best part about being a mom for me. Being the person who gets that love from you, that love which is so pure and so unconditional that it makes you fierce.

So in the end my son, all I want and hope for you is to be a nice and kind human being who touches the lives of different people and makes them happy.  May God bless you with everything you ever wanted and deserve.

To follow Laksh's journey you can connect with us on:


Instgram: @livelifelakshsize


And if you loved reading this or any other articles here, please do hit the follow button and share. Thank you

Thursday, August 1, 2019

Happy 2nd birthday to my lifeline

Oh where have the last two years gone? It  seems like it was yesterday when I was laying in the hospital bed waiting in eager anticipation of meeting you.

This is your second year in our life my darling Laksh, but you already have succeeded to change our lives and make it so complete and happy. You are our lifetime happiness.  Baby, you are the main reason which makes your mom and dad smile and also in some way the world around you. We can’t resist your sweet charm and neither can the people that come across you. You my sweet angel are a total heart stealer.

I love watching you grow, my sweet little boy. Your personality is amazing. You are so funny, smart, and so adorable. You have everyone wrapped around you little finger, especially your mummy. You are such a narrative shifter and I love that in mere 24 months, you have made such a difference in the way people see differently abled people.

You my sweet baby, rock the extra chromosome so well that it makes me wonder, why did I ever worry about anything. You are my guiding star, my love, my reason for being, and my Laksh. Mummy and daddy hope you achieve everything you ever want in life and much much more. Always be kind and happy.

Baby, we wish you a very happy birthday and we love you so much!

Wednesday, July 31, 2019

That day, through my eyes... Double the joy, double the fun.

A loooonnnggg post full of pictures alert.
This post was pending since a very very long time. On your second birthday today, I am finally posting this.

Being an aunt is a feeling that I believe is like being a mother minus giving birth.  Also, I can love Raavya and Laksh to my heart's content and no one has the right to stop me.
Every time I visited a mall or a market I used spill out my savings and buy things that were not necessary. I still do that but now it is mostly for these two angels in my life. The only thing that I hate about them is that they are not with me always. When Raavya was born I was overjoyed, I wanted to see here asap but as I was busy in a shoot for an outdoor schedule. I reached there as soon as possible. 

I was suddenly the grown up in the house. I was not the youngest one in the family anymore. Then one fine day I get a delightful text from my brother and sister in law that I am going to be an aunt again. 

I felt the same rush that I felt two years ago when I learnt about my sister's pregnancy. I told them not to tell me the gender until the baby is born. No one told me for a week or so. And then my niece Raavya very innocently broke the news that she is waiting eagerly for her baby brother. It was hilarious. I obviously shopped like a crazy shopaholic (btw that is not crazy in my dictionary). Someone rightly said that an aunt is a cherished friend and personal cheerleader who will always see you through rose colored glasses.

I remember reaching New York with mum almost a month before you were supposed to be there for you to come to this world and meet us. Bhabhi (my Sister in law, Smriti, Laksh’s proud mother) used to share her pregnancy pictures with us. And those pictures made me more and more anxious and impatient to meet you.
When we saw Bhaiya (my brother, Avijeet, Laksh’s proud father) and Bhabhi at JFK airport on 30th July 2017, it was as if I was woken up to be in my dream. This was such a complex feeling that I can’t even explain. I am not very good when it comes to express my feelings. I am not very good to let my feelings talk. The same thing happened then. Seeing my brother and sister in law after years and being on my first international trip to meet my nephew was too overwhelming. The mixture of all those feelings made the time to come to a standstill when I saw that baby bump at the airport. It was not a dream, it was the reality. I was to become an aunt again. I was already an aunt to a beautiful niece, Raavya. So being given the opportunity to spoil one more child with love and many more mischievous activities to be taught was super exciting.

Raavya made me a Mausi (Maternal aunt) and you made me a Bua (Paternal aunt). I am equally proud of both my titles.
D day. 1st August 2017.  My mother asked him if Bhabhi was ok. He nodded in yes and said that he wanted to speak to dad. He made a video call to him and again with tears of joy told my dad that he was a grand dad now. My sister was with dad at the time and she and Raavya were shouting with happiness.  My Jiju (Brother-in law) was also waiting eagerly for this news that left him super happy. His firsst reaction was 'My son is here.' Finally, it was my turn. He hugged me while I congratulated all of us and he rushed back to the delivery room.
My brother called me and asked me to rush to the hospital asap with mum as Bhabhi was being taken to the delivery room. We rushed there and found out that Bhabhi was already taken in and being prepped for c section. Bhaiya came and showed us to the room and we started waiting. Those were the longest 20 minutes of my life. My brother came back and said nothing and hugged mum. He had an expression on his face that I had never seen before. He cried with happiness. He announced that his son has arrived.
Now comes the part when the bigger news bomb was dropped. Bhaiya came back and said that Laksh was being brought to the room and Bhabhi will come in minutes later. Bhaiya now told us that the doctor’s said that the baby has Down syndrome. We informed the families back home. I was almost completely unaware of this term. So, my first instinct was to ask him what it was and the second was to search the web. I read a few lines about it on web and scolded myself for being absorbed in that. But I said, ‘whateva, who cares’ he is my family.  And the baby was brought to room.
Oh, what a sight! My little nephew looking as red as a tomato was here. My heart was filled up with so many emotions and throat choked up. After Bhabhi came to the room, I congratulated her on being a mother. She was trembling with post operatic trauma but couldn’t hold in the joy and the confusion of the news bomb.
After mum I finally got the chance to hold you in my arms.

 I can’t even begin to tell you how wonderful it was. All I could think was I am your Bua and I am going to shower you with so much love.
The calls to the families started with calling our families with the news. Bhaiya, finally after a long pause and build up announced your name. LAKSH KUMAR.

 I remember seeing a hole between the clouds and posting that picture on my social media with a caption ‘#clouds giving way to the stork carrying my nephew.” I know it’s a lame caption but it’s ok coz I was just overwhelmed with love.

The discussion about Down syndrome started. My brother spoke to dad about it and he was pretty calm about it. He said “everything can be tackled with patience and life for Laksh will not stop at being a Down syndrome kid. This can be dealt later. Savour these moments right now and deal with the things that can’t be changed later.” My sister, being a doctor her first instinct was to explain us about Down syndrome in layman terms. My mother was in denial. But was not giving it much importance because she was busy admiring Laksh. We have shared many firsts during the first five months of your life.
  • Baking my first proper cake for you. 

  • Visiting many places with you for the first time.

  • My first international trip for you.
  • Our first snow
  • Holding a few minutes old child for the first time.
  • Seeing a new side of my brother for the first time.

Frankly, till date I have not been very much worried about the Down syndrome factor. So, what you will not be able to do few things that I or someone else can. But the fact is that no ne of us can love others as unconditionally as you. None of us can enjoy little moments of joy with a smile like yours. None of us have the strength of going through the kinds of surgeries you have gone through and heal with that wonderful full of life smile. We cannot love others in the unbiased manner like you. We do not make the world a happier place like you. We don’t natural spread smiles on the people around us like you do. We don’t have people going ‘awww’ over us. You make our lives fuller with love, compassion, joy and smiles. 

I can’t remember other milestones of my life before you and Raavya in such a detailed manner. You and Raavya give meaning to my life. Both of you are the two apples of my eyes.  I love you both so much. A shopaholic like me has stopped buying things for myself and I keep shopping for you two. 
I want you to know that yes, there will be some people who will treat you differently. But you have a family who will stand by you on every step of the way, no matter what. We will always be there for you. The blood bond that a family share is incomparable. The families fight but they also love each other more than anything else. So what you have an extra chromosome. Only a few chosen ones have those. You are lucky. I am super proud of Bhaiya and Bhabhi for the way they are raising you.
   I am not writing any awareness notes here as that department is very well handled by your parents but believe me when I say this that you are a part of us and no one can change that. Different or same, we don’t care. You are an important part of our lives and no one can change that. We love you Laksh.

P.S : I love you and Raavya the most ;) and miss you guys every single day. I would go beyond my reach for both of you. I love you guys to the moon and back. Why just the moon! I love you guys till beyond the universe and back. ( I don’t care, if that doesn’t make sense at all.)
Here are some pictures of us.

Wish you a very happy second birthday, Laksh.😄💝🎂🎂🎉🎈🎊
May God bless you and showers you with His love, happiness and success in every endeavor of your happy life.

An affair with Mumbai

Mumbai, the city that I call home. The city that stirs up so many emotions in me. A city that I love and yet am not unaware of the issues. A city where people come together in time of crisis but in everyday life, the same people stare or ignore you. Mumbai, a city filled with dreams and dreamers. A city I call home even though I haven't live in it for 10 years. A city that will always be special to me. Which is why, I absolutely enjoyed showing his beautiful city to my beautiful child, Laksh.

Here are some pics from the trip, I wish I has enough words to express what joy this has been for me but for now, let the pictures guide you through.


To the makers of the movie Mimi

First of all, I would like to thank you for opening the dialogue about Down syndrome in our Indian society.  Thank you for showing that a ch...