Monday, September 17, 2012

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 7th. 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 9th month birthday, my sweet Samaira! I love you, to the moon and back, again. Always. Let us walk together...

Wednesday, September 5, 2012

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.