Thursday, March 21, 2019

The story of the extra chromosome

In 2017, we stumbled upon this journey that we did not know we would love and thrive in. Our son Laksh, was diagnosed with Down syndrome and Hirschsprung's disease after birth. And like most, we feared the unknown. We just wanted to have what everyone else was having. All we wanted was a "normal life". Little did we know, 19 months later, our life couldn't be more normal, boring even.


On World Down Syndrome Day, I wanted to take the opportunity to educate people about Down Syndrome. Well, if you search the Internet, it will tell you that Down Syndrome is a genetic chromosome 21 disorder that causes developmental and intellectual delays. In simple terms, individuals with an extra copy of the 21st chromosome (also known as trisomy 21) have certain limitations like they might be shorter than usual, they might speak with a slur, they might walk with support, they might need glasses to see, and they might need oxygen cylinders to breathe.

While all of the above might be true, this is just half the picture. The problem is most of the information on the internet is outdated and untrue. Kids and adults with Down syndrome are doing so much more than what people, especially the medical community give them credit for. Being a parent, we are constantly worried about our children. It is just the same when it is about a child with a disability. It is high time we realize that these outdated statements alone cannot define them. They are so much more than this one thing which is a minute part of their lives.

“When you focus on someone's disability you'll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.” 
― Yvonne Pierre, The Day My Soul Cried: A Memoir



Let’s stop “tolerating” or “accepting” difference, as if we’re so much better for not being different in the first place. Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different.’ – Kate Bornstein

"Chances are, disabled or not, you don't grow all of your food. Chances are, you didn't build the car, bike, wheelchair, subway, shoes, or bus that transports you. Chances are you didn't construct your home. Chances are you didn't sew your clothing (or make the fabric and thread used to sew it). The difference between the needs that many disabled people have and the needs of people who are not labelled as disabled is that non-disabled people have had their dependencies normalized."AJ Withers


Make yourself aware about Down Syndrome. Because they and we decide not to focus on the limitations but the possibilities. And we urge you to do the same.  Here are some wonderful stars that have Down syndrome and are all uniquely different but just as perfect. Laksh and us, are proud to be on it.
Banner created by @raising_peanut (Instagram handle) and it is called 100 amazing faces.






 What a coincidence that it is Holi today, the festival of colors, which is celebrated in India. This day is all about your most colorful, fun or even mismatched socks. Please tag us to help spread the cheer.
Happy World Down Syndrome day!!

7 comments:

  1. Sky is the limit for all of them.
    I love tou Laksh

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  2. Sky is the limit for all of them.
    I love tou Laksh

    ReplyDelete
  3. So true. And well said. I especially loved the quote by A. J. Withers. The stuff that has been normalised makes the different look not normal.
    Thank you bhabhi for writing so well and educating us as well on this extra chromosome because before laksh we had a similar perspective about it just as others. Don't think anyone had an understanding about it in this way.. We used to look at it the way others look at it now. But we are evolving. And the credit goes to laksh. Hopefully we can normalise this notion about difference among others as well.
    Love you laksh.. You may have an extra but u are not extra.. You are so so so special ��

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  4. Thank you for always loving and supporting him. That’s what makes him special.

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  5. Love what you have written Sumu...😍

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