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 child (in utero) with or without a disability deserves a chance to be born. Thank you for showing the varied reactions parents can have when receiving the diagnosis of Down syndrome for their unborn or just born child, even as honest as having talks of terminating the pregnancy.

I am a mom to a baby boy Laksh, who turned 4 on the weekend of August 1st when we watched your movie on netflix. I was pleasantly surprised to learn of the plot of the movie but I ended up with an ache in my heart to learn that even though the diagnosis was given with utmost surety (the words ‘has Down syndrome’ not ‘may have Down syndrome’ were used), the child did not end up having Down syndrome. The lead actor says, “ Bachche mein problem nahi Nikli but tumhari soch mein nikli” (the child didn’t end up having a problem but your thinking sure did). But the point is having Down syndrome is NOT a problem but thinking that way is.

 If only the child did in fact have Down syndrome and everything else in your story remained the same, it would have been perfect, just like my Laksh.

Pumping is breastfeeding too

 

The @WHO says that, “Mothers and babies form an inseparable biological and social unit; the health and nutrition of one group cannot be divorced from the health and nutrition of the other.” And yet somehow I had to justify the need to pump milk at work.

Anyway, based on my extensive experience of pumping for a full 3 months this time around, :-) I have come up with 10 tips that moms like me could use. Please note these are tips that I have concluded based on my experience and may be different from what might work for you. 

🍼Invest in a good hands free pumping/nursing bra.  Trust me ladies, you want those hands free so you can catch up on reading or watching a show, or eating, or taking a power nap.  

🍼 Pump when you feel full (for me it is usually every 4 hours or so now). Initially I pumped every 2 hours when Veer slept for longer or else fed him on demand. I knew I had to go back to work as my maternity leave was only 12 weeks and didn't want the transition to be difficult for him so I started pumping and introduced the bottle to him slowly with each feed. 

🍼 When exclusively pumping, pump at least once in the night if milk supply is less. For me, I pump right before I sleep and then first thing in the morning (which is usually a 6 hours gap). 

🍼 Every drop counts, and don't be hard on yourself if you pumped more or else in one session. Trust me if you feel stressed it is going to affect your milk supply. Try to have happy thoughts, try thinking about your baby. Being distracted is better than being overly focused on the level in the bottle.

🍼 Pump a couple extra times on the weekend if you can. As I see patients most days, I have to follow a very strict 30 minute pump and eat schedule while at work and have to stop pumping even if I am not done coz my patients are waiting. Knowing that I have a little extra from the weekend on reserve makes my work-week pumping sessions less stressful.

🍼 Leave a pump at work if you can. To be honest I am still working on this one coz I have still not found my perfect fit. I lug around my breast pump but I have one from Laksh's time that I am planning to leave at work once my full time location is settled.

🍼 Wash parts with warm water and air dry in between sessions while at work and once you get home wash with soap and water and run it in a sterilizer. You can also store the parts in the fridge while at work in a ziplock bag if there is no access to water, but make sure you clean thoroughly when you home.

🍼 Store the milk using something called the 'bricking'. It is a life changer and I only learned about it through another mom a few weeks back. It saves so much space and is super efficient to keep track of the dates.

🍼 Write words of encouragement, note to your future self, or something that seems like a big dilemma to you right now on the storage bag, and see how you feel about it when you do end up using the milk. 

And last but not least, 

🍼 Remember, exclusively pumping is also breastfeeding. Don't let anyone tell you otherwise.  

First day of school 2020

Yesterday was the Laksh’s first day of school. We had imagined the first day of school to be so different than what actually happened. 

We imagined packing lunches and picking out outfits. We imagined taking a bus ride with his peers. We imagined  lots of hugs and tears. We imagined a group to 3 year olds playing and learning together. We imagined a super excited Laksh returning home after spending his very first day in school. Harry Wong rightly said, “The most important day of a person’s education is the first day of school, not Graduation Day.” We wanted everything to go perfectly on his first day to school. 

Instead, due to the pandemic and our decision to let Laksh learn remotely for now to keep him, baby Veer and others in our house safe, this is what the first day of school looked like. Instead of taking a bus ride we walked to the living room table. Instead of packing lunch we packed our ass on the chair and instead of learning together, 3 year old kids struggled to stay in one place while looking at their screens. But through this all, Laksh’s excitement to learn remained the same. 

Laksh has always been curious and intrigued by new things and eager to learn about them. I hope my darling this excitement always remains the same. I wish you learn and grow as you are meant to and may you have an inclusive and loving support system wherever you go. May you always be seen as Laksh and not as a diagnosis. Spread your wings and fly my baby, you are meant to soar through the skies. 

#livelifelakshsize 

Post Partum depression

Don’t want to take anything away from the seriousness of what happened with Nima, but it has been weighing heavily on me. Writing this post has been very very difficult for me and I am not sure if i should ever share this but I’m trying to #breakthestigma4nima so please hear me out.

This is a photo of me on 06/06/2020 seconds after Veer made his grand entry. I felt every emotion that I could possibly imagine, I felt happiness, relief, joy, anxiety, fear, excitement and so much more.

I was happy because he was finally here and scared because he was finally here, in the middle of a global pandemic. I remember with Laksh, things we so different because he spent the first two months of his life in the NICU. Tomorrow Veer will be two months old so I felt I needed to share this.

I am not sure what I feel Is #postpartumdepression or anxiety because of the current state of the world. I felt something similar when Laksh was born as well and there was no pandemic then. I felt guilt, I felt anxiety, I felt sad, I felt inadequate, I felt disgust, I felt ugly, I felt like I had failed my son. And I thought I felt all that because he was in the NICU for little over 2 months and somehow that happened because of me.

But by the grace of God, Veer has been here with us every single day of the two months  that Laksh had spent in the NiCU and our boys with be with us forever more, but I still feel these feelings. I still feel like I am not enough.

Don’t get me wrong, I don’t feel this all the time but I do feel these feelings of inadequacy. I feel anger and frustration and irritability for small little things. I felt shame when answering the questionnaire my OB made me fill regarding #ppd becasue I didn’t want to acknowledge I felt those feelings. That me, an educated person who has her sh*t together is feeling like she is lost. 

But my question is why? Why do we feel the need to hide our mental well being from the world? Why do we feel that we would be labeled as ‘not fit mothers’ if we say we are struggling? Why do we feel shame in asking for help? 

As south Asians specially, mental health is such a stigma and never discussed openly. People throw around the word ‘ I am depressed’ without truly understanding what it means or how debilitating it truly can be. 

Today sharing about these feelings has felt like a difficult but much needed step for me but I’m doing this because I hope it helps someone feeling the same way reach out and ask for help. 

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:
Facebook: https://www.facebook.com/livelifelakshsize/?
Instgram: https://www.instagram.com/livelifelakshsize/
Website: www.livelifelakshsize.com


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

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:

Facebook: https://www.facebook.com/livelifelakshsize/?

Instgram: @livelifelakshsize

Website: www.livelifelakshsize.com



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

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:
Facebook: https://www.facebook.com/livelifelakshsize/?
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