Friday, October 5, 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 21st 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.

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!

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.


Kaushal said...

Being her big brother, I will kick anyone who bullies her's ass. ;-)

She's lucky to have awesome parents like you guys and won't ever feel left out :)

Trapti said...

Very well written. I am not surprised at all as to how real you guys are about the whole thing ... and how sorted out you are - People first !!! And whenever Sam grows up to ask question about how she is different - well she is very very special and that is what makes her different !! She will get everything extra to match up to that extra chromosome of hers - extra love, extra attention and extra concerns - there is nothing wrong in it ... people are just jealous 'coz that is something they don't get :p

Madhuker Mehta said...

We are proud of Samaira, and more importantly both of you for the love and care you are providing. We are amazed with the patience you both have developed and love you pour for Samaira.

You don't need to worry for future and work more on her needs now. We are confident that Samira will be smart and capable of managing her affairs. However, should the need arise, older siblings like Kaushal and alike, her generation's siblings like Samir and Amar and others will always be there to work with Samaira and her needs.

We also wish that in the years to come, there will medical miracle that help Samaira.

We love you all and let us know if we can be of any help, small or big, any day/or night.

With love and blessings.

Madhuker & Gita Mehta

tamu said...

Very Well said. Sam is very lucky to have you guys as parents. Her smile is so unique that no one can stop themselves smiling back. Though I don't know huge detail of Down syndrome, what I know thru a sweet girl,22, growing in our Jain community. they don't know they are different, it's people around them make them different. We know she is special in our heart and it will be the same no matter what. T & S remember, God knew Samaira would need help, so God put her in your capable hand as he was sure that she will be well taken care. You are special people chosen by HIM.... Lots of love to Samaira. Artikaki & Pradipkaka