For a special day

It has been a while, and I don’t know where to begin 😊. So how about I start with a story.

Before I start, a little disclaimer - This is a work of fiction. Names, characters, business, events, and incidents are the products of the author's imagination. Any resemblance to actual persons, living or dead, or actual events is purely coincidental.

But you know where the inspiration is coming from 😉, at least for now.

//Chronicles of Sam

Episode 1: A story we are here for

It was exactly 6am when she came running into her parents’ bedroom “Daddy, Mommy, I am late for school!! Today is the first day of my chess class and I don’t want to be late.”

Sam’s dad woke up first, looked at the clock and whispered in amazement and half sleep “Sammy, there is still time. Go back to sleep.”

But Sammy was adamant about waking her parents and so she did. While Seth and Tara were still waking up, Sam did her morning routine with utmost efficiency. She made her bed. She brushed. She got ready for school. She decided not to rely on her parents for breakfast that morning, because she didn’t think she could. Instead, she went downstairs to the kitchen and took her own bowl of favorite cereal with milk.

By the time she was done with her cereal, Tara came down into the kitchen. At first, she admired the wonderment of a child Sam was – fierce, independent, someone who knew exactly what she wanted and how to get it. Then she remembered there were 10 minutes left to go to school for Sam’s early morning chess class, and there was breakfast and lunch to be prepared! Breakfast for Sam’s two brothers – Ray and Kay, and lunch for Sam.

Just in time, their 2-year-old Aussiedoodle, Oz, came running downstairs and stared at Tara with an intense look that only he could give. Screaming with his deep blue-brown eyes, “Where is my food mommy, it is about time!” Tara told Oz “I know! I know! But you have got to wait, Oz. I need to make sure Sam does not get late for school.”

Sam said, “Don’t worry mom, I can feed Oz. Oz, come on boy, let’s get some food in your belly.” And just like a champ she was, she took out some kibble for Oz and asked Tara to mix some rice and yogurt in it so she could give Oz his food.  

Tara made breakfast & lunch, and in her typical morning fashion started to yell at all three kids “Kids, come downstairs. NOW!!”

Before anybody knew it, Sam was sitting in the car, with her shoes, jacket, and backpack on. Waiting for Tara to get her act together and drive her to school for her chess class. It was a quick drive, but Sam’s favorite conversation in the car is almost always about her next birthday, when she will be 11 years old. She told Tara, “Mom, on my 11th birthday, I will stay in my room. You, dad, Ray and Kay can be downstairs and decorate so you can give me a surprise. You can let me know when you are done so I can come down and be surprised.” So, this is how her 11th birthday will be celebrated. Sam had decided this the day after her 10th birthday.

At the school drop off location, Sam’s chess coach, who she refers to as the chess wizard, came to get her and other kids into the class. Sam likes to play against the chess wizard, versus the other kids. It totally works for the wizard as well, so she is in good company.

At the end of the school day, Sam gave the biggest, the warmest, the brightest hug to Tara when she came to pick Ray and Sam from school. Ray came jumping and hopping, throwing his hoodie in the sky, and catching it, and doing the usual shenanigans. This is what he does with his excess storage of energy. The three talked about a bunch of random things on the walk back from school.

A few minutes later, Sam reminder Tara, “Mom, you forgot to ask how my chess class was.”

Tara said with shock and excitement, “Oh that’s right, Sam! How was your chess class? What did you learn today?”

“Well, I learned some chess moves. Duh. I played with the wizard and enjoyed my class,” yelled Sam in her happy excited voice.

It was a fun mid-afternoon routine for the three of them to walk back from school, often with a few of their community friends who lived in the same area. Ray would always take the side muddy trails running parallel to the walkway where the rest of the group walked. Sam joined him sometimes, but only if she could convince her walking buddy Taylor to join.

While the evening was routine, there were times when Seth and Tara were at their wits ends. Tired with their day, getting kids to and from their soccer, getting dinner ready, and trying to stay sane while at it. Dinner was ready, and no kid wanted to come to the dining table to eat. Instead, Ray and Kay decided to go outside and play soccer. Tara lost her lid and started shouting at them for taking things for granted, not valuing what they have, not respecting others’ time, you name it. Sam realized this wasn’t the time to talk to Tara about anything. She quickly ran to her room, and furiously started writing on a piece of paper. Five minutes later, she handed the paper to her mom.

Tara read it and started to cry. But they were happy tears. The letter read

“Mom, I have a great idea. How about you stop shouting at Ray for some time and let him play soccer for 10 minutes before dinner time? You can take a deep breath, relax and calm down.

Love

Sam“

That was the magic pill Tara needed that day. Sam’s pearls of wisdom.

When Sam saw Tara cry after reading the letter, she hugged her mom and said “It is ok, mom. I love you. Are you ok?”

“Now I am”, Tara told her while giving her the tightest hug on the planet.

That night, in a routine fashion, Sam asked Tara to lie down next to her in bed for a few minutes before sleeping. It was their favorite thing to do. As they both lay, talking about the day, the good, the bad, the ugly, Tara realized that Sam maybe onto something. Sam had a superpower that she couldn’t put into words. Something she used often to alleviate tension, pain, suffering from her surroundings. Ray and Kay may beg to differ, but that is a sibling story for another time. Her smile lit up any room she entered. But most importantly, in some strange way, Tara realized that Sam is the reason why she is sane, somewhat. And in her mind, Sam’s adventures were just beginning. There is so much to learn and explore about who Sam would become, how she would use her superpowers in days, months, and years to come.

That is a story, both Seth and Tara are here for.

//End of Episode 1

Anyhow. Back to normal programming.

I don’t know if, how and when I will continue with these episodes. How much of it will be real, and, how much of it will turn to a fictional tale of what could be, should be, would be. But the reason I shared it today is because, after all, it is that special day of the year – 3.21.

First observed in 2006 by Down Syndrome International, March 21 was officially declared World Down Syndrome Day by the United Nations General Assembly in 2011. Events all around the world happen on this day to raise awareness and create a single global voice for advocating for the rights, inclusion, and well-being of people with Down syndrome. The date 3.21 represents Trisomy 21, the medical term for Down syndrome, which is the third replication of the 21st chromosome.

We switched schools this year and Sammy has a new team of teachers and support team at her new school. We feel blessed for the kind of love, acceptance and support Sammy receives. When we talked about 3.21 being special for our family, we got some good ideas on how they could celebrate at school as well. We suggested kids wear fun, unique, non-matching socks to school that day.

There is an idea behind using fun socks to celebrate this day.

As part of the celebration around the world, people are encouraged to wear crazy socks. The idea was to get people talking and asking questions about Down syndrome. The idea is to wear brightly colored, mismatched, long, printed socks — or even layer three socks, one for each chromosome. But to keep it simple, we go with fun, any kind of mis-matched socks. The striped socks resemble chromosomes. It also signifies, that socks may be different in pattern or color, but can still be worn together quite happily if we change our attitude about having to wear the same matching socks. Wearing mismatched socks reminds us to celebrate the things that can make us each unique.

Sammy’s class is thrilled to be wearing fun socks today and discuss inclusion & support for Sammy. A lot of which they are already doing, and brainstorm some new ideas. Isn’t that great for fourth graders (yes, Sammy is in fourth grade now, and I CANNOT handle it!).

This video captures a lot of what occupies Siddharth and my brain. I can’t get through it without crying, but that may be because I am a crier.

As they say, onward.