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!

Thursday, March 13, 2014

Chronicles of our conversations = All sorts of random

Sometimes conversations make more sense in my head. But sometimes then need an out. I have a tendency to not forget things. Sometimes pretty much ever. So I think about our conversations for hours and hours. And they linger in my head. Since I invest so much of my mental energy thinking about some of these conversations, I figured I might as well document some of them so I remember my thought process. There is a whole lot of random in here. Most of these conversations don’t connect. They are just important to me. So here they are. All my randomness in one place.
Me: I think we really need to detox
Siddhu: Detox?
Me: You know, phone/technology detox.
Siddhu: Now you are making up your own random rules. We don’t need that.
Me: But, we do. You know I wrote about it a few years back. And I still think about it. Now more than ever.  (This is when I showed Siddharth a blog I had written back in 2009 talking about a smartphone-detox)
Siddhu: (after reading my blog) Now you are just showing off :)!
Me: I totally am. But I am almost very serious when I say this. Seriously. We need to detox. We clearly have issues.
Siddhu: Ok. Let’s set some rules. How about we stay off of our favorite devices when we are around Samaira and Rehan.
Me: I think that’s a good start. Let’s begin with this.

Between the two of us, I am the one guilty of being on the laptop more than necessary, and Siddharth is the one guilty of being on his phone more than necessary. I cannot imagine watching TV without being on my laptop. Siddharth spends any free time he gets, even if it is just 5 minutes, playing games on phone. So the plan is for us to not be on our phone/laptops, especially when we are around our kids. At least not constantly. I have seen Samaira and Rehan be different when we are not on our respective devices. Samaira is a lot more interactive and loving and pro-hugging when we are off our devices. Rehan is a lot more smiley and bouncy when we are off our devices. No joke. I just hope we can keep each other honest about being away from our devices when we are with the kids, and hopefully when we are with anyone in general!
Me: I really want us to eat dinner as a family. All of us together. Sitting on a table. Eating the same food. No different food for Sam and Rehan and us.
Siddhu: Sure I can bring Taco Bell every single night for all four us :).
Me: I am serious man. It is my dream. A serious dream.
Siddhu: You get serious dreams?
Me: Siddharth pleeeeassse. I am really really serious. (If I have ever told the following words to you, it means that I truly truly love you – “your name, pleeeeease”)
Siddhu: Just kidding. I am down with that. Let’s make it happen. I know how to make it happen!
Me: Really ?! How so?
Siddhu: I will get everything we need (a wooden chair, booster seat, etc.) to seat all four of us at the dining table. And then we will have your serious dream come true J.
Me: What about dinner ideas? I already feel plenty judged for what I feed our kids. But I don’t want to make kids meal a BIG deal either. I want them to eat what we eat. I want them to eat what the either one eats. I don’t want to make 3 different things – one for Sammy, one for Rehan, and one for us. And that’s not because I can’t make 3 different meals. But I don’t think that’s the right thing to do. I don’t care what people have to say about what we feed our kids and when we feed our kids. I want our family culture to be a certain way. That culture is love food, eat well, without making a BIG DEAL of kids’ meals. You know what I am saying? I hope I am not coming across as a bad mom when I say this.
Siddhu: No, you never sound like a bad mom. I agree with you.  

I don’t want to come across as if I don’t like nutrition or healthy food. I love food. That is almost my first love. I like to eat healthy, almost. I like to feed healthy. I try my best to eat and feed healthy. I succeed maybe 50% of the times. But at the same time I love leftovers. I don’t feel bad about feeding leftovers to my family. I love cakes. I love me some Maggi. Just as I love me some spinach and broccoli and brussel sprouts. But I don’t always inject every meal with vegetables and I don’t feel bad about that either. I am at peace with myself. I want my kids to be members of my family and not rulers of my family. I don’t know if any of this is making any sense. It made sense in my head.
Me: Do you think we are overparenting?
Siddhu: Is that a real term? What does it mean?
Me: You know…just…if we are parenting a bit much. I don’t know how else to explain it. Like being too fixated with everything our kids do, everything out kids eat, everything our kids are, pretty much everything about them. Not letting our kids just be. You know ?!
Siddhu: …I don’t think we do…sometimes maybe..not too much though. Although I think overparenting is a relative term. According to some people changing anything in their lifestyle at all is overparenting. And according to others we are not doing enough with or for our kids.
Me: True. But I don’t like the idea of us overparenting. So if you ever see me do it, will you stop me? And I will stop you.
Siddhu: <widest grin on his face> :D

I really like my sister’s style of parenting. I want to be like her. I feel like she strikes the right balance of love, nurture, care, let-them-be, strict, scold, time-outs’ish, kids resolving their own differences versus her interfering. She is so cool and doesn’t run behind her kids to finish their lunch/dinner, knows when to revolve her day around kids meals/naps and when not to, lets her kids resolve most differences between themselves, doesn’t take sides when the kids fight, doesn’t even try to find out who is right and who is wrong and who is lying and who is not, and yet, she takes her kids for all the activities they love, she takes them to parks, she loves them so much and it shows, she showers them, she pampers them, and most importantly, she loves them the same! I don’t know how she does it. But I admire her for the way she is with both her kids. She is chilled out yet super-duper-caring. There’s a fine line and I don’t know how she does it.
Me: You know I don’t like zoos.
Siddhu: Really? How come?
Me: Last time I went to a zoo, I re-remembered why I don’t like zoos. The lion, the tiger, the chimpanzee, the turtle, and every other animal we saw in that zoo seemed really unhappy. They all looked really sad. They were constantly pacing their cage. Maybe they were hungry. I don’t know. But seeing them in that limited space, all caged up, made me really sad.
Siddhu: But how will Samaira and Rehan see animals for real if not for a zoo? Don’t you think they need to go to zoos to put a face to the name?
Me: You are right. I don’t know how else our kids will know. I don’t have a solution. Unless it is going to a safari expedition.
Siddhu: Hmmm….so next time we decide to go to a zoo, I will make sure I take the kids and you can choose not to come along. I don’t want you to be sad.

I know I don’t have a solution for how our kids will see lions and tigers beyond just in books and videos. So I will go with this proposal for now. But the whole idea of zoo makes me uncomfortable. Maybe I have to visit the right kind of zoos to feel ok about it. But for now, I am convinced that I find zoos very depressing.
So here is our all sorts of random. Stay happy folks!