Friday, March 21, 2014

March 21 2014: World Down Syndrome Day

Every year, the Twenty First day of the Third month celebrates Three copies of the Twenty First chromosome. Today is the day to spread awareness, knowledge, information, wonderment and the joys of trisomy 21. Every day is that day for me. I talk about down syndrome any day, any time, and not just on a specific day or month. We celebrate Samaira every single day. But today is a day that you can make a difference and share a story of someone you know. Today, it is not just the parents of the individuals with down syndrome spreading the word. Each one of us who knows someone with down syndrome gets to tell a story – to a friend, to a neighbor, to a coworker, to a family member, to a stranger, to a fellow-passenger on a bus or a train, to really – just about anyone. Tell a story of someone you know. Learn more about down syndrome. Be curious about it. Ask about it. Let us celebrate 47 chromosomes. Let us celebrate individuals with 47 chromosomes. Let us celebrate their potential, their loves, their passion, their life.

I sometimes think back to the time when Samaira was born. 17 December 2011. I don’t think about it as much now as I used to, but I still do. I don’t even remember how to describe the emotions I went through when we learnt that Samaira has down syndrome. I just remember it being a little surreal, yet very real. I remember being scared. I remember crying. I remember not knowing what to feel. I had to go through all those emotions to get to where I am today. Knowledge about the permanence of a change and a humble new beginning was colossal. This monumental change in our lives changed us as people, to some extent. It made us more open, more welcoming, more appreciative and less judgmental about differences. Samaira opened a whole new world for us that we would have otherwise not known. She opened a whole new world for our family and friends that they would have otherwise not known. It is pretty mighty, if I think about what she has done, and the difference she has made by just being. If it weren’t for Samaira, I am pretty sure I would have been a mom who compared my kids to other kids, who got nervous because my kid didn’t crawl or talk till a certain age, who got tangled in the timeliness of milestones. While there are legitimate concerns and worries that parents have, Samaira allowed me to be a mom that I don’t think I was going to be naturally. I am at a point where I can celebrate the world around me, and at the same time be content with the world within me. I don’t compare my kids. Not even to each other.

When I contrast the world and the worries I had imagined at Samaira’s birth with the reality of my present time – I wish I could go back and tell myself – don’t worry. Really. To not be afraid. Being a mom comes with the package of being afraid, being worried – of the unknown and what could be. But I wish I could go back and tell myself to not be any extra-worried or extra-afraid. If there is something like that anyway. The reality is, I am just as worried about Rehan as I am about Samaira. I am just as afraid for Rehan as I am for Samaira. And I cry just as much when he is hurt or in pain, as I do for Samaira. We do have some things in our lives that come with the 47 chromosome package – we have regular therapy visits, we see a cardiologist for Samaira’s ASD, we see an endocrinologist for Samaira’s thyroid, we see an audiologist to constantly monitor Samaira’s mild hearing loss – to name some. But these challenges seem no more or less than the challenges I have for Rehan. They are different challenges. But their gravity is the same. I realize that apart from my regular full time job, I have another full time job – that of being a mom who worries all the time! I wish I could go back in time to when Samaira was born and tell myself that while there are challenges that are specific to down syndrome, most of my everyday challenges will not be what I was thinking about. My every day revolves more around figuring out what to make for lunch/dinner so that Sammy and Rehan don’t throw any tantrums, chasing Samaira and Rehan around the house while they chase each other, doing grocery/shopping/chores, playing with my kids, dealing with cold/congestion/viruses/rashes/saline drops, making sure humidifiers are clean and functional, kids’ sleep routine, singing rhymes and songs for as long as possible, dropping off and picking up kids at the day care, stealing moments/minutes/hours just for me, taking time out for just Siddhu and me, and, the usual.

A while back I heard from some other moms that they also wake up in the middle of the night just to make sure their babies are breathing. I realized that while Samaira has narrow nasal passages and some degree of sleep apnea, I am not the only mother who worries about their kids’ breathing at night. It brought a degree of normalcy into my worries. What keeps me up these nights has nothing to do with down syndrome, but everything to do with Rehan’s diaper rash that just doesn’t seem to go away. So now I know better. Now I know that both my kids have “special needs”, because they both have needs that are so very specific to them. This is not to say that I don’t think or worry about the future. I have a tendency to think. To overthink. It is an old habit. And an addiction. So I think. I think about what Samaira will be when she is 3, 5, 6, 7, 10, 13, 16, and so on. I wonder about the kind of person she will be, the kind of challenges she will have, the kind of friends/boy-friends/girl-friends she will have, the kind of physical/emotional/intellectual capabilities she will have. I think about it all. I worry about it all. But I try to remind myself of the difference between the perception and the reality of my worries. My worries seem larger than life in my head. Larger than the cause of the worry itself. In reality, these worries are smeared with an ever so slight hint of hope and sanity. These worries tap into an unknown part of my mind and body that gives me the strength to find solutions and plough through any situation. This unknown tap of strength is not something I think about when I worry in a vacuum about this future that will be. And the problem with worry is that its immediate lack of purpose makes it so un-actionable that I worry even more, because all I can do is think. So any time I fast forward and worry about Samaira’s future, I try to push myself back to the present. To what is real. To my current issues, which aren’t what I had imagined 2 years ago.

When I look at Samaira, I see a toddler. A toddler who is extremely loving, pro-hugging, very moody, very very stubborn, sometimes crazy, sometimes lazy, very talkative, sometimes shy, oftentimes friendly, plenty caring, mess creator, surprisingly opinionated (I didn’t know someone could be so opinionated at the age of two!), most of the times attention seeking, a remarkable big sister, and, invariably amazing. When I look at Samaira I know that terrible-twos is not a myth, it is a fact of life. When I look at Samaira I know that nothing in this entire world is a better healer than her melt-in-your-arms hugs. When I look at Samaira I know that she will burst into giggles when I mention Humma Humma (hindi song from the film Bombay). When I look at Samaira I know that she is a person who can’t see anyone sad or crying. When I look at Samaira I know that her lens of life does not count chromosomes, it just looks at people as they are, and accepts them so unconditionally it is not even funny. This is as normal as it gets fellas.

I celebrate this day for my goofball. Happy world down syndrome day, folks!


chaitanya said...

Truly beautiful. Your strength and positivity is inspiring. Samaira and Rehan are lucky kids to have you guys as parents!

Reeti said...

Tarang -you've penned your thoughts so deeply and I can't imagine how you do it all and still be sane. Kuddos to you and your strengths as a woman!

Ameet said...

Very touching and inspiring.

Trapti said...

True sister, I also absolutely admire Sammy and am amazed to see the difference she has made to my life by just being ... We are lucky to have her around to teach us how to smile, how to love, how to have fun ... and btw the troublesome two's etc ... welcome to the world of quasi-preteen tantrums .... this is what it is called :p

Manish said...

#respect is one word that describes my emotions while reading your blog.

Trish said...

I loved reading this post,Tarang and I think I am falling in love with your little princess :)
Oh and as for terrible twos..I hear you..My secondborn is 2.5yos and I am SCARED of her!LOL

Kishin Sainani said...

I admire your courage and strength not only to accept it so well but also spread this to people all around you to motivate them and make them stronger to handle their life situations in more mature way.