Saturday, March 21, 2015


My favorite part of the day happens at noon. I pick Sammy up from her day care and drop her off to her afternoon pre-school at that time. All the kids in her day care get done with their lunch and are winding down, about ready to take a nap. Some are reading books. Some are singing together.  Some are walking around. Some are taking care of their pee-pee and poo-poo business. Samaira could be doing any of the above activities when I reach there to pick her up. As soon as I enter the class, Samaira comes running to me and says “I love you, mumma,” patting my back as she says that. As if saying “I will take care of you, mum.” My sweet kid. Just as we are about to leave, Sammy’s best friend ‘C’ comes running to her saying “Sammy, no no no no.” Sammy responds with “Come here ‘C’. Give me a hug.” This starts an eternal hug routine in her class in which most of her classmates hug her before she leaves. All the kids in her class are so generous, so nice, so sweet. 

My day is made pretty much everyday at noon.

It is nice to see that my kid is so loved and so loving. It is one of the proud moments for any parent - to see your child form bonds outside of immediate family. We want a strong family foundation. But the world around us is just as important, if not more. 

Word Down Syndrome Day is celebrated on March 21st every year. It signifies 3 copies of the 21st chromosome in each cell. All together 47 chromosomes, as opposed to the typical 46 chromosomes. Chromosome 21 is the smallest human chromosome and it represents about 1.5 - 2% of total DNA in cells. This chromosome contains about 200 to 300 genes that provide instructions for making proteins, performing variety of roles in the body. It is these extra copies of genes on chromosome 21 that disrupt the course of normal development and cause the characteristic features of down syndrome. It is also associated with increased risk of certain health problems.

These, and several others, are medical facts about down syndrome. We, as parents, learn more about it. We absorb it. We try to understand it. We try to monitor it. We aren’t naive about it, just because we have an incentive to get hypothetical PHDs in all related medical aspects. We are not in denial about it either. It’s not like it won’t happen if we don’t think about it (unless of course you believe in that kind of stuff, which I do, but I understand its limitations too). So, it is there at the back of our minds. Always. Not taking any significant real estate until there is a reason to. It doesn’t blur our vision either. We don’t view her issues with a lens of its-because-of-down-syndrome. But we are aware. We aren’t pessimistic about it either. There is the belief, the faith that every challenge needs to met with an equal and opposite resolve of the will. Some battles we will win, and some we won’t. That’s alright. Fighting that battle is important. Not giving up is important. Seeing your child suffer is hard. At first you want to take the suffering away, because it is so unfair. Then you want your kid to make it through. Be strong. Be resilient. Survive it. Even if it is something as simple as a cough or a congestion. Health is important and we realize it all too well.

Samaira needs more effort and time in completing her tasks, so she does ask for patience. But as far as attitude and expectations are concerned, they are no different. Our expectations are that both our kids are nice people, give their 100%, not give up, learn to rise from ashes, find the meaning of life - you know, the simple business as usual kind of stuff. No biggie. Jokes aside. We are not living our lives with any mission. There isn't a mission to do something or achieve something. We are attempting to live happy lives. It really is that simple.

We are so blessed to be surrounded with so many lovely people. I say it a lot. I will say it a lot more in future. Our ecosystem is kind of mind blowing. Our family and friends rock our world by being such nice and loving people. It sounds quite basic but that’s all you need. That’s all you sometimes cannot find. So we don’t take it for granted. Not at all. We appreciate and value every ounce of that goodness. Everyone around us has a very yes-you-can attitude toward Samaira. Everyone around us loves her unconditionally. It almost gives me a heartache to see how good everyone is. It has spoiled us so much that sometimes we don’t remember that there is a world outside of our world, and it may not be so kind. I honestly don’t know how to prepare for it. But for now, we are basking in the warmth and the company of the people we know.

I remember reading every article, every journal, every blog, every newsletter related to down syndrome in the first year and half of Sammy’s life. We wanted to make sure we were doing everything. We didn’t want to miss an opportunity. It thankfully did not lead us to forgetting to live her childhood. Sammy made sure we enjoyed her every mood, her every look, her every babble, her every toddle. But we are not as crazy into read-everything-out-there mode anymore. We have learned to relax a little. We have realized that the big ocean of information is endless. We will never know it all. We don’t have to know it all. All we have to try to know is Sammy. So we do that.

We only have three years worth of information about down syndrome. We know nothing more. Everything else is a speculation. All our fears, all our optimism, all our planning - is that for an absolute unknown that cannot be predicted. We fear nonetheless. We are optimistic nonetheless. We plan, only somewhat. But on this day, on the world down syndrome day, as I think about spreading awareness about down syndrome - I struggle a little. I am not sure what to tell. We know only so much. So little.

We know of this three year old girl.

Who has beautiful eyes.

Who loves food. Mostly carbs.

Who hates vegetables, from the bottom of her heart.

Who loves to sing lullabies to dolls\bears\people\invisible objects.

Who is on the shorter side, and so are her parents, and brother. 

Who has a hole in her heart that can hopefully heal itself, but we aren't really sure.

Who had sleep apnea.

Who had an adenoidectomy and tonsillectomy. 

Who has started stuttering over the last few months. It does worry us.

Who makes friends in a heart beat.

Who wins hearts in a heartbeat too.

Who deeply cares for her younger brother and also bosses him around plenty.

Who screams nooooooooo anytime we want her to do something she doesn't want, or sometimes screams for no good reason.

Who dances like no one is watching.

Who is averse to public restrooms and it can take up to 20 minutes of waiting and convincing her to go pee-pee in a public potty seat. We have even delayed a flight take off by 10 minutes because Sammy and I were in the restroom on the plane and not ready for takeoff. I am not proud of it. But it definitely makes me chuckle now.

Who loves to sing.

Who starts all her stories with “Once upon a time, there was a …” It could be a lion, a monkey, a table, a blanket. Whatever she feels like.

Who started going to preschool 4 times a week.

Who gets OT\PT and Adaptive therapy a couple of times a week.

Who has a best friend at day care called, ‘C’.

Who has parents, brother, grandparents, uncles, aunts, teachers, friends - who care for her very dearly. 

So this is what we know about down syndrome. This is what we can spread awareness about. This is one angle of down syndrome. I wouldn’t say it is all fairies and lilies and rainbows. But it sure is a whole lot of fun. 

If ever, ever, at all, you have any questions about down syndrome - please ask us. We may not know everything, but we may know some things. For the things we don’t know, we could find the answers together. The world will be a better place if we ask the right questions, have the right attitude, harbor the right vibes. I can’t take all the problems out of Samaira’s life. I don’t want to, anymore. I just hope that she will be stronger and people will be more aware. 

Happy World Down Syndrome Day!


Trapti said...

Cheers to most amazing family that I know ... total thumbs up to You n Sid and thanks a ton for giving us Sammy and Rehan ... I absolutely adore these tiny brats ... love you my darling kiddos!!

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