Some smiles for my Friday

There are some things that just make me smile, even if I try not to.

Samaira has a yoga session every week. I take her to this 1:1 yoga session where she practices with her teacher while I sit on the side mat and observe both of them. It is typically an hour long session and I, for no reason at all, am smiling for about 80% of that session. Really, for absolutely no reason. Something about this hour just makes me smile. It is kind of funny how Samaira’s yoga session centers me and brings me into a zen mode.

When I go to Samaira’s day care to pick her up at the end of the day, she gives me the BIGGEST smile ever and waves vigorously at me. That makes me smile.

The thing that has changed over the last few weeks, however, is that Samaira’s toothless smiles have been replaced by her central & now lateral incisor filled smiles. My sister told me only recently, that when her babies had toothless smiles, she used to often wonder what their teeth-filled smiles would be like. Honestly, the thought of Samaira’s smile changing never occurred to me until my sister said this to me. It finally became a reality now that she actually has a couple of teeth coming out! And boy is it different. She has a different smile now!

I really miss her toothless smiles. And that made me nostalgic about the last 15.5 months with Samaira. What else have I taken for granted that will change over time, and that I will miss later on? I wish I could capture it all and preserve it for later. Maybe I should take more photos & videos. We are not a camera handy family. As in, we don’t always have camera ready to capture the everyday precious moments of life. Maybe I should make an effort to be more camera-ready and capture it all! While I am having this monologue, I am internally resolving to capture more of Samaira’s childhood. I think, for me though, a first step would be to experience Samaira’s childhood in a little bit of a more be-in-the-moment state (can’t think of a better word). I feel like in the hustle-bustle of life and work, I sometimes forget to just experience things as they are. 

Ok, so here is a resolution. How about I just try to be more present when I am with Samaira and try to experience all that she is? Once I do that, I will graduate to capturing it all as well. I feel pretty good about my new resolution! Obviously, it is easier said than done! 

But at least it is a happy thought for a Friday, and that makes me smile J.

Peace and Love on this special day

Today, March 21^st, is a celebration day. March 21^st = 3/21 = 3 copies of the 21^st Chromosome. It is the World Down Syndrome Day and we wouldn't have known about it if it weren't for Samaira. Today is the day we celebrate the value, acceptance and inclusion of people with Down syndrome. So I woke up this morning and clapped, with Samaira.

Some facts about Down syndrome - it occurs in one in every 691 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down syndrome is that they are more like others than they are different.

Some facts about Samaira – she is now 15 months old and she totally rocks our world, sometime literally. At first I thought she is this super innocent looking child who can do no wrong. Now she has started giving me this attitude and I feel like I am getting to know a new her. Sometimes I wonder if this is what 15 month age group is like, then what happens during teenage years! She tends to be really moody sometimes. She likes eggs one day and not the next day. And now we have a dozen eggs sitting at home with only Siddharth left to finish them as I don’t eat eggs! She has become very stubborn about her choices off late. In a lot of ways, she reminds me of me. Eeek. That’s scary. But she has still maintained her mischievous grin that could melt my heart, no matter what she has done. The one thing that she teaches me every day is to clap. Every time she thinks she has done something cool – she claps. Every time she thinks someone else has done something cool – she claps. If she sees someone else clapping she has the look of “clap it like you mean it”. So now I clap. I clap to celebrate every little thing, especially with Samaira. She has taught me to use the pause button in life, to enjoy and celebrate every little victory and every little achievement.

So here’s to celebrating today. Here’s to peace and love on this special day. Just because. 

If you are ever curious or have any questions – do let me know! Changing outdated perceptions starts with open conversations with those around us.  

My little girls

A month is a long time to be away from home. We spent this last month vacationing. We spent the first half of the vacation with my in-laws and the second half in India with my folks.

Time flies when you are having fun and loving life and that’s exactly what happened in India! It was a combination of ALL my favorite people – Maa, Daddy, Bro, Sis & fly., and of course the Husband and the Daughter. It was so much goodness packed in so little time that I am left craving for more. I am now missing all the laughter, jokes, arguments, discussions, crying, yelling, dancing, singing, eating, sleeping, gossiping, shopping, you name it!

My nieces, P & A, are the most amazing little girls I have ever witnessed. This was the first time they were meeting Sam. I absolutely loved how they interacted with Samaira. P being the oldest one wanted to play the big sister and assumed the role so beautifully. She kept telling everyone “since I am the big sister, I have to take care of Samaira. She is my responsibility.” P & A kept singing for Samaira till they were totally rhymed out. A being the younger one knew she wasn’t big enough to hold Samaira, but was definitely interested in singing to her and playing with her. Some of these moments are captured in my memory ever since and make me smile every so often, especially when I am by myself. I was even more fascinated to see Samaira respond very positively to my nieces. Samaira smiled every time she looked at them and wondered at them with curiosity.

Now that we are back, I am dreaming about the next time all my girls will get together!

Chinku Monkey, Pinky Mumma, Rocky Daddy & Binku Monkey

My Dad is very creative. He can come up with a brand new story, a joke, a song, a poem, or a rhyme – just in a matter of minutes. My Dad’s favorite story for Samaira is that of Chinku monkey and Pinky mumma. That’s a tradition I decided to continue with Sammy. Every night before she goes to bed, I tell her this story about a Chinku monkey and Pinky mumma. When Siddharth heard it he suggested that we add two more characters to this story. So now there are Rocky daddy and Binku monkey as well. Binku and Chinku are brother and sister. Samaira loves to hear these stories at the end of the day and sometimes sleeps listening to it. These stories include everything that happened in Samaira’s day – going to her day care, playing with her friends and teachers there, going to the mall, playing outside, eating yummy food (which mostly means some combination of quinoa, long guard, lentils – because that’s her favorite) and so on. Somehow, I also talk a lot about bananas and Chinku monkey’s best friend Babbar sher (lion). It is a pre-bed time routine that I absolutely love and treasure. 

My own Chinku monkey turned one in December and we celebrated her turning one in January. I am finally posting pictures of that celebration in February.

As my sunshine grows, she has turned into a talkative, happy, stubborn and zesty little babe. She babbles all day long and can talk to anyone and everyone walking on the streets. Most folks wave back at her and say hi – sometimes I feel like Sammy traps them into giving a reaction. Either way she is happy as long as there are people around and she gets to talk.

And while we ready ourselves for the arrival of Binku monkey in our lives…we are relishing the joy of our only Chinku!

New year on a positive note

Last night I was up for about 3 hours past mid-night, thinking. I do that a lot. It’s a bad habit I cannot overcome.

I was thinking about my 2011. How the biggest highlight for us that year was Samaira, and everything to do with her – her birth, her first cry, her first nursing, how she fought against so many challenges at the hospital, how she would oftentimes smile through it all, how she inspired us to broaden our limited world! What a highlight this little gift was. There was also a low-light that caused Siddharth and me to have endless discussions and arguments for months!

Then I started thinking about my 2012. How the biggest highlight was again Samaira – spending our entire year with this precious gift we received in 2011. It’s been magical, to say the least. There was also a low-light, again, that caused us to have endless discussions and arguments for months.

When I thought about my 2011 and 2012, I somehow thought of the low-lights first. I let them overcome my thoughts for several hours, and not for the first time, probably not the last time either. When I shared my thoughts with Siddharth, his first response was, “Well, what was the best the thing that happened to us in these two years? Samaira. And everything else is way too insignificant and not worthy of being important. Why are you letting it overcome you, when you have Samaira to overcome it?” “Excellent point” – I said. I don’t know why I let that happen.

So my resolve in this new year is to think positive. Positive first, positive last, positive in-between. That might be a bit much, maybe. But I’d take that over the current status any day. I have decided to focus on my highlights, and not on my low-lights. It’s not that I am going to ignore the negativity in life, because I can’t. It’s just that I will not allow it to become bigger than me. I know my 2013 will have a highlight, and chances are there will be some low-light too. I know what I will be focusing on this time.

While talking to a colleague sometime back I told him about our hospital stay when Samaira was born. He talked about his Dad having a condition that came as a shock and how they were figuring out how to deal with it. After both of us had narrated our experiences, neither of us said anything for a good 45 seconds. No, I wasn’t timing. Then he said, “things happen.” Then there was silence for about 15 seconds again. Then he said, “…and the true measure of a person is how she/he bounces back.” It made sense to me. Later that day, I told my brother about this conversation. His reaction was “OMG! This might be my favorite quote of this entire year.”  I asked him – “it’s a pretty good quote, but how come it is your favorite?” His response was “because there is so much power in these two simple words – things happen – that they cover the entire spectrum of what you consider unexpected, life changing, etc., without taking away the magnitude of these events...and still leave hope for what’s next.” I hadn’t thought of this particular angle before. But the shocking realization of “things happen, so what?” rocked my world. And my brother’s J! Anyway, moral of the story is that the positive and brighter side of any coin, will ultimately win. That’s how our world is constructed. And I am in agreement with it. The question is, how long would it take us to get there?

A few nights back, I was skyping with my oldest, longest friend, S. I have known her since I was in 5^th grade (or 5^th class, as we say in India). She has seen me when I was an immature, stubborn kid all through the school years. She has seen me when I was still immature, still stubborn semi-adult in my college years. And she knows me now….more than a decade later…still stubborn, but somewhat mature. We both acknowledged we have changed SO MUCH, and that’s a euphemism. We talked about how we used to fight over the most frivolous things and make a huge deal out of nothing. I remember having gone for a duration of at least a few months of not talking to my closest and best friends in school – because I was adamant about not talking first after a fight. Yes that was me, not too long ago. I was telling her how I wish I could have had all this wisdom back when I was in school, and even in college. I would have seen things in a different light and not wasted our time fighting, and doing other immature things. But there is no way I could have been what I am today without going through every single experience of my last 10ish years. Not a chance! By the way, I may need to have a similar conversation with Siddharth 10 years down the line. You see, growth never stops J ! So as much as I value growth, and maturity, and awesomeness, I realize the importance of going through a not-so-perfect phase or experience.

If I had my very own genie, until sometime back my wish would have been to take away all the hurdles from Samaira’s life and make it smooth and comfortable and beautiful and perfect. But having gone through life – from my teens, to being 20-something, to now – I don’t have any such wish for Samaira anymore.

I am ok with her facing difficulties and challenges in life.

I do however wish her the will and the strength to overcome those challenges, and the ability to look at and enjoy the positive side of life.

Our 2012

I am writing after a very long time. It’s almost like I have forgotten how to write. Thankfully for me, I haven’t forgotten how to think. In fact I have spent a lot of time thinking. Thinking about 2012 and what it means to me. We (my family and I) have had our ups and downs this year, but the thing that strikes me the most about this year is that it seems to have flown by faster than any other year, ever. Depending on my frame of mind, January 2012 either feels like eons ago, or like just like yesterday. It is a little bizarre in some ways, and I can’t explain this contradiction.

I have a very crisp memory of Samaira’s birth and everything that followed, like it happened yesterday. Yet, it feels like she has been in my life for as long as I can remember. It’s probably because I can’t imagine my life without her. What did I do before she entered our lives? I am pretty sure I did a lot. But I like my life with Samaira in it a bit more.

I had visited my niece in India when she was about 9-10 months old. The thing that amazed me about her was that the first thing she did when she woke up in the morning was smile. Big, bright, beautiful smile. And that used to make my day. I was convinced that my sister had a part to play in that. Because my sister is inherently a happy person. She finds ways to be happy no matter what the circumstances. And she passed it on to my niece. From that visit on, I had hoped that my baby would also wake up with a big, bright smile the first thing in the morning. And she does. She makes my day. Samaira wakes up in the morning, starts by chanting dadada-tatata, then she claps and then when we take peak at her she smiles like she had the best dream ever, and then she giggles as if sharing that dream with us. My mornings with her make me happy.

Our year started with coming home with our one month old from the hospital after a month long stay. Samaira made some things really easy for us as new parents – she has always slept through the night and we didn't really know what sleepless nights meant until the first time she got sick at 6 month old and was congested and couldn't sleep through night. That’s when Siddharth and I exclaimed to each other – “so this is what it is like…”.

While we slept through most nights this year, we also experienced a lot of planned doctor and therapist visits. On an average we have about 3-4 visits/week for Samaira on either of this account. It feels pretty normal to us, especially because we have known nothing else.

This year, I learnt what it means to be a mother. This year I understood my mother like I didn't before. This year, I was more in awe of my sister than I ever was.

This year, I learnt a lot about myself. About Siddharth. About us. This year, I understood the strength of our relationship. I thank that stars that aligned for us to be together forever.

This year, I learnt how to make a decent green smoothie and enjoy it too. I think more than the smoothie itself, I like the idea of it. It stimulates my mind more than my taste buds, but that does it for me.

This year, I discovered that I love my parents, brother and sister more than I love myself. I have always known their importance in my life. They are my rocks, pillars, anchors, and so on. But I hold them very close to my heart, closer than I’d ever thought.

This year I learnt that friends are in fact the family we choose for us. Sometimes we get lucky. Siddharth and I got very very lucky.

This year I learnt to bake. Just cakes, for now. As I spent every month-birthday of Sammy, I wanted to bake something. I did, most of the times. I have had several failed attempts in the past and so I always delegated baking to Siddharth. But I realized I am not that bad after all.

This year, Sammy made us realize that baby girls clothes are pretty stinking cute! I go to the mall to shop, and I cannot stop at one, or two, or three either. I don’t think Sammy cares. She finds her clothes attractive based on the number of things she can chew off of it.

We celebrated our first Diwali with Samaira this year. It was so so special. I do long for the day I will get to celebrate this festival in India, where it is most fun!

Sammy turned one earlier this month. Time flew. No idea where. While she was sick through her birthday, and we had to cancel her celebration, we were overjoyed and exhilarated that our baby is all of ONE, and ready to take on this world! We did have a little celebration for which my in-laws, my brother & two of his friends from California joined us!

Thanks to Imran for the special effect

Samaira said her first word a couple of weeks before she turned one. She said “Appp..” for her toy “Happy Apple”. At this point, anything and everything is an “Appp..” to her. We show her a ball and she insists that it is an “Appp…”. We try to reason, but she has her way of arguing that doesn't let us go far.

Siddharth and I have two different roles for Samaira. He makes her laugh, and I calm her down. Either of us can’t do what the other person does no matter how hard we try. We have spent a good chunk of this year playing our roles!

One of the most important things I learnt this year is that I don’t control a lot of things I care about. I also don’t control things that happen to the people that I care about. But I can love them for all they are, and for all they aren't. Instead of questioning, I am learning to accept. It takes a lot of practice, and I hope to get there someday.

This year, Siddharth had to travel a few times for work. I have a new found respect for single parents. I don’t know how they do it all. I have no clue. But hats off to you!

There is a funny contradiction I chanced upon this year. While sadness and devastation can happen on life changing events and things that impact us in a big way, happiness is not like that. Most of my happiness comes from small little things that I don’t stop to think about, that I sometimes take for granted, and that don’t necessarily have a life changing ring to them. Happiness can come from any angle, and I just have to be open and ready to embrace it – a smile, white snow, pani puri, beautiful eyes, innocence, a random act of kindness, a song, a voice, a thought, a gesture, a drive, a sunset, a clear sunny day, new shoes, a high score in Wordament, really – just about anything. Isn't it a beautiful thought? Isn't it a relief to know that we don’t have to wait for something big to happen to be happy?

On the brink of this new year, here is my wish for my baby….

May you live to learn and learn to live

May you wish to share and yearn to give

May you get what you want in life

May you do more than just survive

May you face any defeat

With a lot of grace and none of grief

May you nurture strength and strong will

May you climb every mountain, surpass every hill

May you have the power to re-imagine and power to dream

May your enjoy life like a chirpy curious stream

May your care about your friends

May you be the one who heals and tends

May you always be my sunshine

May you be gentle and be plenty kind

May you see in yourself what I see in you

May you always be you, may you always be true

Our 2012 has been filled with joy, learning, growth and satisfaction. Peace.

PS: We do believe in lots of cake :)

Cozy, Celebration

I love the month of October for several reasons.

October has a cozy ring to it. October means orange. Orange of Fall leaves. Orange of pumpkin. Orange of Halloween. Orange of lights. And orange feels cozy.

October also brings us closer to November and I miss the festive culture back home in India that November brings with Diwali, Navratri, Durga Puja, fireworks, new dresses, mega-lit homes, and on and on.

October also brings us closer to December and I love December even more. I like the potential snow driven home arrests in December and the coziness it results in. I love going to malls in December and witness the chirpy, cozy, warm celebration of the winter. I love the festive nature of December.

Samaira’s day care did this cute foot print thing to celebrate the creepy cozy October. 

Samaira’s day care took Fall-themed pictures that I can’t wait to get my hands on! I sneaked this picture on my phone anyway.

Last week we also celebrated Samaira’s 10 month birthday and she enjoyed by literally digging into the cake!

The most fun celebration came in when Samaira’s day care teacher told me that Samaira fought with a kid at the day care. It is definitely a weird one to celebrate, but it brought a sense of relief, at least for now, in me. I loved hearing that when a fairly mobile child tried to take away Samaira’s toy, she held on to it and screamed to keep it that way. Sam’s screams and facial expressions are gradually being flooded by the rich hue of her emotions. She has a different scream to indicate when she is angry, she is bored, she is frustrated, she is hungry, and she is sleepy! All that she can communicate with her almond shaped eyes and her super-satisfying yelling.

And I celebrate all her expressions. Because that's what cozy inspires me to do!

Our first

Sundays come in all shapes and forms. There are lazy Sundays. There are crazy Sundays. There are hazy Sundays. This morning, I woke up with a lot of excitement and a tad bit of anxiety. We were going to go for our very first Buddy Walk. I wasn’t sure how I would feel – emotional, happy, thrilled, nervous…not really sure. But once I was there, all my built up anticipation melted away into gold and blue t-shirts and people full of potential all around me.

And what made it special? Our friends. I know Sundays come in all shapes and forms. Today was the most important Sunday of my 2012. Thank you friends, for molding your beautiful-sunny-Seattle-Sunday to fit ours. Thank you for showing your support by being there for us...as we walked our very first walk. It means the world to me that you showed up! 

Here's to many more :).

Buddy Walk 2012

This month, October

The entire month of October is celebrated as the down syndrome awareness month in the US.

There are millions and billions and trillions of cells in an adult body. Each cell contains a nucleus, which in turn stores genetic material in the genes. Our genes contain the code of life and are responsible for all of our inherited traits, and contain the instructions for making everything the body needs, especially proteins. These genes are packaged in bundles called chromosomes and are used to refer to as distinct portion of a cell’s DNA. More specifically, it is the DNA that carries the genetic information in the body’s cells. Humans typically have 23 pairs of (a total of 46) chromosomes. In case of down syndrome, the cells have an extra copy of the 21^st chromosome. As a result, each cell in the body has 47 chromosomes, as opposed to 46 chromosomes. This extra chromosome produces extra protein resulting in a body and brain development trajectory that is different from typical. A large percentage of folks in our community believe that this condition should be referred to as Trisomy 21 - its scientific name, as opposed to down syndrome – the name given after John Langdon Down who was the first one to describe these symptoms as one single condition. Down syndrome is the single most common human birth anomaly.

Within the down syndrome community there is a big push to use people first language. So, it is encouraged to say “a kid with down syndrome” as opposed to “down syndrome kid”. Because this kid is much more than just down syndrome. There is an awareness to refer to the kids who do not have down syndrome as typical kids as opposed to normal kids, especially when comparing them with kids who have a different composition. There is also a sense that 47 chromosomes are just perfect and there is no need to change anything. But there is a hope that this world will have a greater degree of acceptance with every passing  moment. 

These are just some of the facts regarding down syndrome that can be found on the internet in abundance.

There is another angle to down syndrome awareness, and that comes from having someone who has an extra copy of that certain chromosome in your life. Every single day we count on our blessings because we have Samaira. Something has changed in our lives, in us. Yet, nothing has changed. It is an intangible concept. Siddharth and I have changed somewhat because life has given us a short cut to live, really live. To Life. While we are not above it all and have our own set of worries for Samaira when she will be 5 and 15 and 25 and so on, we know better – just a little bit. We know better than to compare, to worry about things that we cannot control. I don’t think this would have been our natural trend otherwise. This is how we are because of the journey we have gone through in the last 9ish months. We have learnt the importance of friends and family, more than we could ever imagine. And while we have changed in some ways, the fact that we have a beautiful daughter and our happiness is deeply intertwined with her has remained unchanged. Our feelings when we look into her eyes, play with her, sing to her, and listen to her - are unaffected by any other external factor. Most importantly, the moments of joy and the relationships in life are as true as they always were - and that hasn't changed!

I still fear for the day when Samaira will face exclusion because of down syndrome. I don't know what I will do then. I don't know what I will tell her to make her feel better. I fear for the day when a bunch of kids will bully her. I fear for the day when for some reason Samaira would feel like she doesn't belong. At this moment, I just don't know. And I am hoping that when that time comes (which I hope it never does) I will magically know what to say. But more importantly, I hope that Samaira will be stronger than I am, and she will absorb all-things-positive and be unaffected by any negativity around her.

But at the end of the day, this thing is much bigger than Samaira. I hope that next time you see someone that's not typical, you can see their heart before you notice their features, height or weight. I hope you see their light before you respond to their appearance. I hope there is greater and unconditional acceptance - in our society. In our world. 

Samaira has filled our lives with a whole bunch of expected and unexpected joys. I can’t even begin to enumerate the number of ways in which she has made me happy.  

I can still feel the unruffled joy of her birth!

Friends visiting us every single day during our one month stay at the hospital was something I wasn’t even expecting. But in some way it brought a sense of normalcy to our otherwise not so normal hospital-stay. I have learnt that you choose friends in life and sometimes you end up making lucky choices.

T wish Samaira

A with Samaira

 A relative of ours works right opposite the hospital that I delivered in and she made it a point to visit Samaira almost every day during our hospital stay. Her husband hand-made a hat for Samaira! These gestures spoke volumes and I almost didn’t need any explicit words to feel the connection.

Samaira in the special hand-knit hat

Samaira’s cousin has taken the massive step of sharing his toys and a 19 year old so-far-unshared-blanket with her! Life and its generosity take a new meaning every single day :).

K sharing his blanket with Samaira

...and toys too

The satisfaction of coming home with Samaira for the first time was a very special feeling. My heightened vulnerability and insurmountable joy were very pronounced. Very visible. It was like all the ups and downs that we went through at the hospital didn't change a thing at home. At Samaira's home.

Homecoming :)

The thrill of celebrating her monthly birthday’s is the highlight of my month. For the sake of sanity, I am planning to discontinue this tradition at one. But I sure am going to miss it!

Samaira's 3rd month birthday

The delight of seeing a budding friendship is one of my favorite things of raising a child. I wish them strength and togetherness.

Friends!!

Love of grand-parents – always special.

Nani & Nanu with Samaira (Mamu just hanging in the background ;))

Bapu ji - Baa with Samaira

Friends who bring delight, joy, support and positive vibes because they really do care!

Friends!!

All this has been so much more enjoyable because I get to share this journey with my best friend who is a little bit of a cute-goofball!

Life :)

Our family - parents, siblings, relatives, and, all our friends that we may or may not get to hang out with frequently enough, and, each one of you who has in words, thoughts, actions or otherwise sent positive vibes for Samaira - make this journey amazing!

So when I thought about writing something to create awareness about down syndrome, I couldn't think of a better way than to share our lives up until now. Share our family. Share our friends. Share our fears. Share our joys. 

Please know, that it is people first. Always.

Walk with me

There is something called Buddy Walk. It is a program that was established in 1995 by National Down Syndrome Society (NDSS) to promote acceptance and inclusion of people with down syndrome and to celebrate down syndrome awareness month in October. The name itself signifies inclusion between friends of every ability – buddy walk. The Buddy Walk is now in its eighteenth year.  What started in 1995 as 17 walks has grown to more than 250 walks across the country and around the world.  Last year alone, 285,000 people participated in a Buddy Walk and collectively they raised over $11 million to benefit local programs and services and NDSS national advocacy initiatives. The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is an inspirational and educational event that celebrates the many abilities and accomplishments of people with Down syndrome. A buddy walk will happen in the Greater Seattle area on October 7^th. You can find more details about this walk here. Samaira, Siddharth and I will be there. I have let our friends, family and relatives know of this event and some of them have decided to join us in the walk.

While we haven’t seen the “exclusion” side of the special needs world yet, I value “inclusion.” We are happy to live in our own bubble of friends and family who love us and have showered us with nothing but positive emotions and vibes. We have felt nothing but inclusion so far. While I hope this continues to be the case for the rest of our lives, there may be exceptions on the way. And for that, I am not ready.

I still remember first reactions of some of my people. I remember the first thing that my brother told me was “It doesn’t matter what the next few days look like, I know Samaira will have a good life. She will be happy.” While what my brother said didn’t matter back then because I was so consumed in the immediate impact of the diagnosis, it matters now. It is the most important thing today. I remember my Dad’s first reaction was “We don’t care what the doctors have to say. We love her.” I remember a few of our friends & family who visited us every single day at the hospital right after Samaira’s birth. They saw us from day 1 when Samaira was just a few hours old, to day 2 when we learnt about her diagnosis, to day 3 when all I could do was cry when alone, to day 5 when I wasn’t crying every 5 minutes anymore, to day 15, to day 30(ish) when we finally got discharged. None of my friends cried in front of me, but I know some of them did cry. The tears were more for the uncertainty that awaited us, for the change in path there was. Little did I know then that even on this alternate path I will meet other travelers, make some everlasting friends, see trees & their shadows, see sun glistening through those trees, face hurdles on the way, and gather the strength to overcome those hurdles. Essentially, experience similar content as I had expected, just packaged differently. I am not sure if any of this makes sense, but this is how my brain has been processing my experiences these days.

9 months later, I know so much more than I did on day 1. I know we are on a slightly different learning path, but boy is it fun. We haven’t seen any other way and this is the only way to be. And it is amazing. Now, I can’t imagine things playing out any other way. Our little cuddly-smiley package turned 9 months today. She hasn’t been well for the last few days but that doesn’t stop her from smiling every so often. I wonder where she gets so much strength from. As creepy as it sounds, I spent several minutes just watching Samaira sleep today. I couldn’t help but admire her beautiful face – her perfect almond shaped eyes, perfect thin lips and perfect little nose. I even caught her smiling a few times in her sleep. I could watch her sleep all day, every day. In fact I could take that up as a full time job.

All our friends can vouch for what a peaceful child Samaira is, but she definitely has her phases. There are times when she doesn’t want to be left on the ground even for a few seconds. There are times when she is super cranky and irritated, while we struggle to decipher her code for cry. It becomes more challenging during the days that Siddharth is not in town – his new job demands traveling outside of Seattle. Those days that I am home alone with Samaira are fun & tiring all at the same time. I now have a new found respect for single parents. I don’t know how they do everything from getting up in the morning, to feeding the baby, to getting ready, to getting the baby ready, to getting to day care, getting to work, coming back home, feeding the baby, entertaining/playing with the baby, putting them to sleep, and then prepare for the next day. 

All said and done though, I am still in the honeymoon phase of my brand new baby and am celebrating her monthly birthdays.

Mug-cake for Samaira's 9th month birthday

Happy 9^th month birthday, my sweet Samaira! I love you, to the moon and back, again. Always. Let us walk together...

So much love

Out of absolutely nowhere, I had a lightening like dramatic feeling inside of me this morning. It was a feeling of extreme exhilaration because I am a mom and I have a baby, a realization that I am very lucky to have a child in my life, a sensation that every day is a lot more brighter because I have Samaira in my life, an emotion that can quickly be lost in the hectic, messy, unpredictable, crazy, not-boring-for-sure nature of my everyday parent-life! While I try to remind myself of the goodness every time I can, and while a simple yet unaware smile from Samaira can turn my frowny brows to much better crescent shaped brows – I am not always that positive. I get lost in the routine and lose the essence of why I am doing everything I am.

Oh, well.

I have changed after Samaira’s birth, somewhat. But I cannot articulate exactly in what way. I could try. I now know what it means to love someone more than myself. Samaira made me love love more than I knew I could. She has made me realize what it means to put someone else - their happiness, their interests - before my own. I have always been high on love and I have always loved with all of my self. But loving Samaira, while exhilarating, is a little hurtful – more than all the previous times put together. It is hurtful because her joys are my joys, her victories are my victories, and her pain is my pain. I feel more vulnerable because she is someone who can touch me like no one has ever been able to. Ever. While that defines love in general, there is something inimitable about a parent-child love. There is a greater sense of responsibility and attachment. There is a heightened need to ensure nothing ever goes wrong. There is fierce desire to do whatever it takes to remove the hurdles, or better yet, prevent them from occurring altogether. Knowing very well that all of what I want to prevent is inevitable.

When I look around me, I see other parents, going through very similar emotions. There is a sort of universal feel to this sentiment, this love. When a child gets hurt, it is the parents who suffer, just as much if not more. When a child is in pain, it is the parents who agonize. When a child is not well, it is the parents who struggle. And when a child succeeds, parents enjoy it as their victory. I now have a greater ability to relate to and empathize with other parents. Even though I may not understand everything parents do, I don’t judge. People do what they think is best for their kids, in the best way possible. The sentiment that drives us all is love. A whole lot of it.

When Siddharth and I greeted down syndrome in our lives, we did not know what we were up against. There was a lot of fear, pain, anger, angst, uncertainty, unknowns, and just a bunch of unexpectedness. It has been almost 8.5 months since Samaira’s birth. While those feelings still prevail to some extent, there is a greater sense of acceptance in me. No thanks to me. This acceptance has been driven primarily by Samaira. It is her eyes, her touch, her smile, her voice, her emotions, her presence, her ponytail, her baby-toes, her tiny fingers, her pretty much everything that has driven me to absolute acceptance. I have come to see Samaira for who she is. On a per-hour basis, down syndrome does not occupy my mind. On a per-day basis, it still does. I remember writing some time back about not understanding the feeling of won’t-change-a-thing, because I would have wanted to change her chromosome count if I could. Today, I understand that feeling. I wouldn’t change a thing in Samaira. The reason I say that is because she really is amazing the way she is. Every ounce of her. Changing her chromosome means changing her genes, her protein structure, her cell composition in a way that she will change to be a different person. Really, a different person. And I truly love the person she is. I don’t want that person to change. And for that, I wouldn’t-change-a-thing in her.

That said, I know it is not a perfect world. I know everything I wish for won’t come true. I know the best I can do is prepare my baby to live in this world, to fight for what is right, to accept, to live, to love. And all I can hope for is a chance for my baby, opportunities for her, people in her lives who value & accept her for who she is. Samaira is a lucky girl. Her birth made us realize how blessed we are to have absolutely wonderful people in our lives. We have learnt that our friends, family and relatives are our biggest strength. We have seen them love Samaira for who she is, every minute of the way. And for that, I am thankful. I have come to realize that the most important role I will ever play is that of a mom, and I am thankful I got a chance to be one.

With so much goodness and love around me, I want to focus on what is truly important. Health. Heart. Honesty. Happy. My People – people I love.