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...

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