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. 

Sista!!

I may have said this a few times already, and I may say it again several times in future too - the best kind of sibling relationship there could be is that of two sisters! Needless to say that I absolutely LOVE my brother. He is one of the nicest people I have come across, has utmost integrity and has a heart of gold. In fact my love for my sis is at par with my love for my bro. But even he might agree that a sister-sister connection is absolutely priceless.

My sister is an amazing friend to me. We love each other unconditionally. Our relationship has not changed because of our respective marriages, in fact, it has become stronger with time. We can be brutally honest to each other regarding things we don’t like in the other person, knowing very well that we don’t wish bad or hurt for each other. We definitely fought a lot growing up – for clothes, for gifts, for chocolates, for Maggie (my brother was an integral part of these fights), for friends, for space, you name it. But over the years, this is one relationship I could count on not deteriorating with changing times, changing relationships and changing circumstances.

My sister’s daughters, ‘P and A’, were game-changers in furthering the importance of this sister-sister connection. They brought me even closer to my sister! I see them fighting for toys, attention and hair accessories today. But I also see a beautiful relationship in their future, which will only get stronger as they grow up. I hope that Samaira finds ‘P & A’ to be her real-sisters, and not view them under the umbrella of cousins. The kind of relationship you share with your cousins is inherently different from the kind of relationship you share with your own siblings. I want Samaira, ‘P & A’ to love, hate, fight with and make-up with each other just like they were real-sisters! I wish for them the kind of friendship my sister and I have. The physical distance between us makes this a huge challenge, but my sister has done an amazing job of making Samaira an integral part of their everyday life so far. I hope I can learn from her and continue that with Samaira as she grows older.

A (L), P (R): This is the first time I am taking the liberty to post pictures of anyone other than Samaira, Siddharth and me. I haven't done that so far mostly to be sensitive to other's privacy.

‘A’ recently celebrated her 3 year birthday!! She is all grown up and it hurts my heart, I don’t know why. Well, if I think 3 is all grown up, then I guess I should wait for her 16^th birthday! ‘P’ is 4.5 now, ‘A’ is 3, and Samaira turns 8 months today. I wish these three girls a lifetime of happiness and togetherness! I wish them the ability to accept the joys and sadness in life with equal grace and strength, and respect themselves while respecting others!

Normal. Perfect. The Best. Good. Happy.

I hadn’t given a lot of thought to the kind of parent I would be before Samaira was born. I was hoping that I would be a good mom, and my lack of over-enthusiasm on seeing a baby wouldn’t come in the way of me loving mine. But it is probably safe to assume that I would have been a typical mom with typical joys, and typical worries of “oh why is she not smiling yet”, or “why is she not sitting yet”, or “why is she not crawling yet”, or “why is she not talking yet”, or “why is she not walking yet.” The innate tendency to look around and compare would have definitely caught my usual, albeit, darker side. But Samaira’s diagnosis has put some sort of a reset button on what could have been, and I haven’t spotted myself comparing her…in real sense. I have learnt to enjoy Sam for who she is, and only for who she is.

My normal has shifted.

Normal is not something I had dreamt of necessarily, I had just assumed that would happen. So, it is not as if something I had dreamt of did not happen. It was just something I had assumed did not happen. That I think has been the biggest adjustment on my part. When something you assume, take so matter-of-factly, don’t even imagine any other way – does not happen – there is an automatic reset button of sorts that triggers. This change in perspective can only happen if you are in special situation. There is absolutely (maybe, almost) no other way you will have this perspective.

I sometimes think about what I want for Samaira anyway. And then I realize. It doesn’t matter what I want. I may want her to be someone, to do something, to have certain things – and really, it doesn’t matter. I sound like I am giving too much into “I can’t control it” sentiment. I see it more as “just be” sentiment. I strive to provide the best opportunities for Samaira. But do I strive to get perfection and the best as output from her? Not really. Not even close. Do I want Samaira to be happy and have a good quality of life? Sure I do, knowing very well that it is yet another want that I won’t be able to guarantee for Samaira. Do I want her to be happy? Sure I do, again knowing that there is no way to guarantee that.

 We have had lots of tears and lots of laughters. These days when I tear up, I don’t really know why. Is it because of the shifted normal, or because of my non-desire for the best or perfection? Or is it because I cannot guarantee a certain output for Samaira? I don’t really know. Being a parent is so much about acceptance. Sort of unconditional acceptance. If you cannot do it – it is your own loss – because everyone else will be just fine.

Samaira is not, as they say, a typical child…and I am not a typical mom…and we are not a typical family. And it is all good.

Just promise me happy, and I won’t bother with perfection :).

Magic touch

More often than not, Samaira sleeps through her car rides. Even if she is not sleepy at first, car rides can easily put her to sleep. But sometimes she doesn’t. Those are the times when she gets super chatty. While driving, I sometimes try and touch her car seat edge in the hope that she will become aware that her mommy is right there. This one time, she touched my hand as I was trying to flap the top of the car seat, and, for reasons I cannot explain – it felt like a magic touch. Her hands felt so soft, so small, so tender that all I could feel was the need to give her extreme care and protection so she never loses “it”. Her unexpected touch felt like magic. At the same time it made our vulnerabilities – her’s and mine, very real – how she needs me and I need her.

I was looking at our pictures from December last year and it almost made me feel like an outsider looking at someone else’s life. I guess the first few months of Samaira’s birth feel a little surreal now. I still can’t believe things we have experienced in the last 7.5 months. It still feels surreal that we decided to get our pregnancy photo shoot done on December 16^th, and Samaira decided to make her grand entrance to this world on December 17^th – I think she was just being nice and wanted to give us the satisfaction of getting our pictures taken while I could still flaunt my pregnant belly. It still feels surreal that a day and half after she was born, while we were standing next to her incubator, the nurse told us that Samaira has down syndrome. Our reaction to this news feels surreal. The next few weeks and months feel surreal. I don’t know at what point all of this became real.

But today feels real.

We have been spending long-quality-morning times lately. She wakes up at 5ish and starts her day with a sound of “aaaaaa…” That’s my alarm. I am so not worried about putting any alarm clock these days. Shockingly enough, I enjoy waking up with her to feed her, play with her, dance with her and get her ready for the day care. I will probably enjoy sleeping in just as much though ;).

Soon we are going to get to the point where I will be able to play with her hair plenty – if she lets me, that is. For now, we are doing a Flintstone Pebbles style pony for Samaira. My nieces, P & A, also flaunt this style of pony and look so cute that I invariably want to eat them up. Even though my sister and I are thousands of miles apart from each other, she has done a wonderful job of connecting my nieces with us – at a very emotional level. And she has done it, what seemed like, effortlessly! I believe that two sisters’ bond is probably the best kind of sibling-sibling bond – and I hope Samaira forms that bond with P & A! I hope they fight plenty, spend time talking/not-talking to each other, and at the end of the day – love each other immensely. That’s what sisters do.

I love spending time with Samaira, now more than ever. Her smile and giggles melt all my worries, any and all, into thin air, at least temporarily. It is fun learning more and more about her personality every single day. She has a killer gaze – one that can penetrate right into your soul – no kidding. I am a total fan of her intense gaze and her meaningful smiles! I wonder what kind of a person she will be….

Keep your sense of humor

There is a lot I am at peace with. Life is good with Samaira, Siddharth and me – all together, in one place! Our family. Unaffected by external, unwanted noise.

Samaira started her day care a few days back. I love her primary care giver there, Miss N. She is an amazing 73 year old grandma like lady who absolutely adores Samaira. Someone at Samaira’s day care told me that as a parent you have to keep your sense of humor, and if you don’t then you will end up crying. So true. Not just for parents, but for anyone. For everyone. Yet so difficult to follow. At least, for a new parent. At least, all the time. We have some cough, congestion, fever and pneumonia lingering in our family off late, but the happiest person marching through all of it is Samaira. A few hours after we took her to the ER because she had 102+ temperature, Samaira was smiling and giggling, of course when she was not coughing. I don’t know what this girl is made up of but she can make some amazing things happen. The day after we took her to the ER, I was out and about trying to get the right meds for her, the ones that she is potentially not allergic to. Somehow that took me 4 hours and a lot of frustration and a whole lot of worry. But when I came home to my smiley-pumpkin Sammy, I couldn’t help but laugh with her when I saw her smile and giggle.

The funny thing about tough-times is that often times you can laugh it off when in future, but not so much when it is happening. In that sense, I sometimes wonder if future could come before present just so I know that I will be able to laugh it off then, and so that I don’t worry so much while I am going through it in present. Twisted logic, I know. But that’s the thing about wonderment – nothing is off limits. It is so hard for me to see Samaira cough and feel congested and go through sickness, but now that she is feeling better, all I can think of is how she was smiling through it all.

While speaking to my brother the other day, I realized how Samaira has the power to bring us to a happy place, no matter what we are surrounded with. I feel truly blessed to be born to my parents, and to have grown up with my brother and sister. They are everything I could have ever asked for in a family. They are loving, classy, trustworthy, people with the highest order of integrity I have ever seen, imperfect and absolutely unconditional. The reason I know love today the way I do is - my family. And it is pretty darn powerful. So, randomly, out of nowhere, I just want to thank Maa-Daddy, H and P (my brother and sister) – for being in my life. I am a better person because of you and I wouldn’t have it any other way, ever. That’s what families are for. We stick around. And whatever tough circumstances each of us go through, we remember and remind each other to laugh. Keep our sense of humor. It helps.

Our girl turned 7 month old on July 17th and we celebrated it with chocolate cake made of Hershey’s cocoa powder. Happy Birthday, baby! I love you.

It takes two to talk

No no, it really does take two to talk. That’s what Samaira has recently started to suggest to us. She is building her own vocabulary to communicate with us and that mostly includes sounds like aaaaa, eeeeee, unnnnnggg, gggggggg. While she is perfectly capable of enjoying her monologs, she prefers to talk to people who have eyes and nose and mouth. And that includes her talking puppy, giraffe, monkey, hanging butterfly, Daddy, Maa (yours truly), etc.

There are times when she is making those oh-so-fascinating sounds and I am not looking at her. Those are the times when I hear a shrill shriek that says “aauuuhhhhhhhh”, which means “look here, I am talking to you.” Cool, eh?

Sometimes when I run out of things to talk to her and I am completely rhymed-out (I wonder if that is normal), I start talking to her about things like Higgs Boson, Ranbir Kapoor’s latest movie, some high profile political court case in India, Mamata Banerjee, Obamacare, etc.

But what she enjoys far more than my talks is Siddharth’s outrageously funny expressions and his version of Michael Jackson’s songs, both the things that I am more or less incapable of doing. I guess we both do our own thing that kind of works!

That said, Samaira is very generous when it comes to showering us with her smiles so we feel good about whatever it is that we are trying to do. Her giggles (and sometimes just the thought of her giggles) manage to crack open my deepest darkest moods and invoke the loudest of the laughter no matter where or with who I am. I have smiled to myself several times in past, but I have never laughed to myself before this. I used to think Siddharth is weird because he can really laugh-out-loud to himself, sometimes even when he is asleep (his explanation is that he cracked a funny joke in his dream). But now I feel like I am the weird one in the relationship :). Oh well, so worth it.

Our last week was a little eventful when we found out about Samaira’s ASD, strabismus, sleep apnea and potential surgeries associated with all of it. But her conversations, smiles and giggles make me believe that she can venture through anything with an air of, ummm, I guess laughter! 

Peace - more often that not. Content - kind of, sometimes, little :).

Our new alarm clock

In fact our new alarm clock turned 6 months on Sunday. My friends showed a lot of insight when they got a special message written on the cake for my baby shower. As much as I knew how true it is, I could not fathom the gravity of its true-ness until a few months back!  

Our Sam works like a clock work. There are definitely times when she goes off of her schedule. But for the most part, her internal body clock is pretty tuned to waking up at 7am. And now that our alarm clock is 6 months old, she has been developing more such patterns.

I need something really really happy and calm today, so here it goes!

Love. Peace. Content. Smiles. Hope. Life. Love.

Hush, little baby

Hush, little baby, don't say a word.

Daddy’s gonna buy you a mockingbird

And if that mockingbird won't sing,

Daddy’s gonna buy you a diamond ring

And if that diamond ring turns brass,

Daddy’s gonna buy you a looking glass

And if that looking glass gets broke,

Daddy’s gonna buy you a billy goat

And if that billy goat won't pull,

Daddy’s gonna buy you a cart and bull

And if that cart and bull fall over,

Daddy’s gonna buy you a dog named Rover

And if that dog named Rover won’t bark,

Daddy’s gonna buy you a horse and cart

And if that horse and cart fall down,

You'll still be the sweetest little baby in town

Even before Samaira was born, this was a very special poem for Siddharth and me. Siddharth, famous for rarely/never showing his softer side to the rest of the world, teared up with this poem because it signifies the lengths to which he would go to make sure our baby is always happy. It signifies that “no matter what happens, I will never let you be unhappy and will fix any broken situation you might be in.”

When we learnt about Samaira’s diagnosis, Siddharth teared up at the thought that he won’t be able to fix this for her… and then we both cried. I say fix with mixed emotions and extreme caution, knowing very well that Samaira is really perfect the way she is and there is nothing to be fixed. She is the most amazing baby, for us at least. But I know that having 46 chromosomes instead of 47 would have made some things easier for her. But then again, I tell myself that 46 chromosomes wouldn’t have been a guarantee of a happy life anyway, so why do I have to fret about 47 chromosomes. I tell myself that at the end of the day, it isn’t the number of chromosomes that will determine the quality of life for Samaira. Her quality of life will be determined by her attitude, her gratitude, her honesty, her genuineness, the kind of person she is, the kind of opportunities she could get, the kind friends/relationships she will make, and the kind of parents we can be for her (I am hoping the good kind).

The most painful moments so far have been when she cries (either while getting her shots, or during her sleep study) and looks directly into our eyes and there is absolutely nothing we can do to ease her pain. There is an extreme sense of helplessness and a thought of “I know baby…it hurts….but it will be over before soon….I promise.” The happiest moments are when Samaira giggles and laughs and brings her hands together to cover her face while laughing, as if she can’t contain the joy of laughter within her and needs her hands as a cover to stop it from overflowing! I love my mornings with her.

I wish all sorts of nice things for Samaira. But most importantly I hope she is a nice human being. I hope she understands, with time and experiences, what some of the really important things in life are. I am slowly beginning to realize that the most important things in life have little to do with your income, your beauty, your status, your popularity, how others treat you, or even others’ perception of you. Having all of the above will not guarantee happiness. The most important things in life have more to do with truly being happy. I am talking a very special kind of happy here. You can have everything in the whole wide world, but if you are the kind of person who can run over someone else’s happiness & honor to get yours and prove your worth – then your happiness won’t last long. Maybe it will, but it won’t be worth it for sure. That’s not the kind of happiness I am talking about. I am talking about the kind of happiness you get when you can get happiness for yourself without hurting other people. I hope Samaira can be the second kind of happy, and can preserve the honor of others while honoring her. I personally find it very hard to respect people who are totally self-absorbed, so much so that they can’t see beyond themselves, and their own good, and their personal happiness. That is the reason why I think it is very important to honor oneself and others – all at the same time. It’s not as if I have never been a bad person – I have. But I regret being that person who hurt someone to get what I wanted, even if it was eons ago. And now I know it was so not worth it.

The interesting thing about important-things-in-life is that you only learn about it with experience. It is so hard to look beyond the flattery, the compliments, the bling and the luxury of the so-called-important-things-in-life, that it takes a lot to even begin to comprehend what this truly important stuff is all about. And unless you have experienced the worthlessness of the other stuff, you won’t be able to appreciate of the true worth of what is important. I am really not old enough to have experienced everything that is out there. But I am experienced enough to know what is really really important. I am not above it all. I still love my bling and shine and shopping and shoes and gossip and glitter, but with a very humbled soul, knowing now that beyond a point – it doesn’t matter.

I hope Samaira gets the strength of a 500-year-old-tree’s-trunk to stand up for herself & gets the heart of 500-blue-whales to honor & respect others’ feelings and heart while standing up for herself! And most importantly, I hope she smiles her way through this journey of life. I am far more of a realist than an idealist. I also think there is nothing wrong in being selfish. But this one - about taking care of oneself, albeit not a the cost of others - is an important one. So while we know we can’t fix everything for Samaira, we will be satisfied in knowing that she can handle it all, gracefully. 

Our PEPs group lead sent us this article about parenting and it is one of my favorite ones at that...resonates so so so so much with what I believe in.

I love these two people!