Monday, October 27, 2014

We Share

For once, I was responsible. It almost never happens. In fact I don’t remember the last time it did. But I was sick for most of last week. So much so that I had difficulty breathing and sleeping on multiple days and nights. I finally started feeling a little better toward the second half of the week. A couple days into my sickness, Sammy got sick. She got croup. At first we tried to handle the situation like pros. Oh, she has fever. That’s alright. We can handle it. Who needs a doctor anyway? And then her voice got all horsy. We instantly figured it was croup. So we started researching causes, symptoms, and cure. We were being the google-doctor. You know. Humidifiers, hot showers (for Sammy :)), and driving-with-window-slightly-open were our best friends. But when her breathing got worse, we thought it was time. It was time for us to quit pretending to be pros and to make a run to the pediatrician.  

So last Thursday we took Sammy to a doctor. This doctor was an almost 80 year old, affectionate, likeable, almost lovable man. So endearing. I almost had a crush on him. Anyway. That’s beside the point. Siddharth reached the clinic with Sammy and I showed up about 15 minutes later. The doctor had already gone through one round of counseling with Siddharth. Humidifiers. Hot showers. Driving-with-window-slightly-open. The usual suspects. When I walked in, the doctor said “I will give you time to catch up with your husband and will come back in a few minutes to answer any of your questions.” Siddharth explained everything the doctor told me and I immediately exclaimed, “This is exactly what I read online.” The doctor walked in after some time and Siddharth told him that I had read the exact same things online. To which he jokingly responded “Then I must be doing something right…if I am saying the same thing as the internet.” I did feel slightly embarrassed. Knowing very well how the medical community must detest the google-doctors. Anyway. Since Sammy wasn’t feeling well, I held her close to my chest in a sitting position so she could breathe better. As the doctor was leaving the room he said “So now you know what to do.” I said, “Yes. We do. In addition to that, we need to keep Sammy away from Rehan so he doesn’t get croup.” Honestly, I said this only to sound like an obedient mom of a sick patient, trying to please the doctor. Especially, in an attempt to recover from the previous embarrassment. The doctor responded by saying “You can’t. Don’t even try it.” In my head I was going “Are you for real !? You are the coolest doctor ever!” But in reality, I think, the only words that left my mouth were “What?!” In my head I was going like “Aren’t you a doctor? Aren’t you supposed to advise us against letting Sammy and Rehan transfer germs to each other, and other people?” In reality, all I asked was “Why ?!” The doctor said “There is a reason why your husband and you have caught most colds in the last three years than you have in your entire lifetime put together.” He is right. We have. He continued, “That is because you model sharing for your kids. You teach them to share by example. You share your things. Sharing sickness is an integral part of sharing. So don’t bother trying to keep your son away from your daughter. They will get close to each other. Let them. That’s how it should be.

On one hand, there is nothing profound about it this incidence. But the more I thought about, the more I was simply blown away by this powerful thought of sharing. We keep telling our kids to share. Sometimes in the most unnatural circumstances possible. In circumstances that we as adults may shy away from sharing. We ask our kids to share their toys, their books, their food, in the middle of them using whatever it is that they are using. But what this doctor reminded me is that the way our kids will actually learn to share is by seeing us share things with each other. It will not be by us telling them to share. So the moral of this long windy story is not just that old wise doctors is the way to go, but also a reminder that sharing is what we do as a family. Knowingly or unknowingly. Every single day. For things that are desirable, and for the things that aren’t. For the things that need it, and for the things that don’t. For the things that are tangible, and for the things that aren’t. We share our thoughts, our actions, our insecurities, our passions, our loves, our fights, our visions, our lives. It is extremely, and insanely fulfilling.

So yeah. We share. We all do. It is kind of awesome.

I don't know if he wants to share. I don't know if she is giving or taking. But they are sharing :).

My Positivity
Nostalgia. We had a massive power outage in the Greater Seattle area over the weekend. While it sounds pretty grim, it has its upsides. If the power outage goes for long enough, then your (smart) phones will stop working. You TV will stop working. You laptop will stop working. Your music will stop working. You internet will stop working. Your cable will stop working. Life, as we know it today, will halt. While the power outage over this weekend didn’t last that long, it did remind me of a time almost 10 years ago. We had power outage for multiple days that year. And everything stopped working. Smart phones were not as pervasive then but there was still the internet, cable, TV, etc. When everything stopped working, after some time of lamenting, we were forced to connect, talk, and interact at a much deeper level. So this power outage over the weekend reminded me of 10 years ago. Those were some sweet happy memories.

And, Happy Diwali :).

Monday, October 20, 2014

R-Word. Stop.

I thought quite a bit before writing on this topic. There are several reasons why I have felt the need to be less particular about the use of this word. The fact that I myself used this word not too long ago without giving it a second thought. The fact that a lot of people who use it mean no harm. The fact that most people use it in their daily lives to indicate humor, more than a negative intent.

But something changed it. And I decided to write about it.

This year’s Buddy Walk was A-M-A-Z-I-N-G. I love it when people show up to support us, our kids, our community. I respect it when they change whatever they had planned for their day to join us. I understand it supports us and Samaira. And I also understand it broadens the horizon of every single person who attends the Walk. Being amongst incredible people who are truly inspiring and people who show us that a diagnosis does not determine the things that you can achieve, is special, to say the least. So, yeah. I love the Buddy Walk. Everything about it is incredible and extremely close to my heart. This year, as we were almost done with the walk and were about to go home, we were approached by a beautiful young girl, maybe in her teens. She asked if Samaira has down syndrome and we said “yes.” She asked us if we like the R-word, and we immediately responded “absolutely not.” She then said “I don’t like it either.” That. Right there. Changed my opinion. On whether or not I wanted to write on this topic. It doesn’t matter if it was a part of my vocabulary before. It doesn’t matter if it is a part of other people’s vocabulary now. It doesn’t matter if the intent behind this word is harmless most of the times. When that young girl told us “I don’t like it either,” something stirred inside me to say “spread the word.” I thought someday, it could be Sammy in her shoes. Or it could be Rehan. Detesting the word because they will be called so. And it will hurt them. And it will hurt me.

So here. For a very selfish reason. I have decided to talk about this word. And why it hurts. And why we shouldn’t use it. And why it is absolutely not ok to use this word.

There are things that we do. There are things that we don’t do. And then there are things that we absolutely must never ever do. Use of R-word is one such thing that we absolutely must not do. At first it seems like a harmless, innocuous thing to do. People say it with an air of funny attached to it. In most cases I rank intent over impact. But in this case, I can’t. It doesn’t frikkin’ matter what your intent was. It absolutely does not.

Your impact matters.

You can read more about the campaign to “Spread The Word To End The Word” here.

Having a conversation to raise awareness about this word may sometimes be tricky or difficult. But the best way to do it is to indicate that the use of R-word is not ok, especially when used as a synonym for idiot. This word has been used for people with intellectual disabilities for long enough that even when you are not using the word in that context, it actually demeans a whole bunch of people without you even knowing about it. It is therefore not just a figure of speech. It goes beyond that. Trying to look for a word to replace the R-word in your dictionary will be a good start to show respect to a huge community that truly deserves it. 

Words can hurt you. Words are not harmless even if we wish to pretend they are. So it is never too late to begin. I figured why not spread the word because it will shape the society and the culture that my kids will grow up in. It will impact the people who will be their friends and companions. So why not take this step to help people understand the gravity of this word they take for granted. This word should be erased from our minds. Our vocabularies. The Oxford dictionary. Whatever you may. Let us stop our kids, our neighbors, our family, our friends, our colleagues, our community – everyone – from using this word. Please.

My Positivity
I have broken out of my shell and decided to talk about the R-word. I had hesitated so long thinking that maybe I am extra sensitive about it now. But it is no big deal when people don’t actually mean any harm. I tried to convince myself that going mainstream about it will somehow mitigate the impact of this word because there is something to be said about giving people the benefit of doubt. It can’t be that bad. Getting over my denial phase about this word. Realizing how truly negative it is. That is my positivity. I feel liberated in a very strange, incomprehensible way. It feels good.

Friday, October 17, 2014

Stereotypes: No thank you, please.

All the girls in one team and all the guys in the other team.” It is one of the phrases that annoys me a lot. Don’t get me wrong. I have nothing against being in an all girls’ team. That is never the problem. I love girls’ night and girls’ girl and girls’ team and man's man. But my problem is always sorting on the basis of gender. This might get very controversial very fast. There are a lot of places where gender based divisions make sense. Like in case of public restrooms. But for some other things, it seems like an unnecessary rule that people impose just because. And that bothers me.

 I am also not a fan of the typical husband-wife or boyfriend-girlfriend jokes. They thrive on generalizations and stereotypes.

And don’t even get me started on statements that start with “we men…” or “you women…”

I don’t know what it is about these generalizations that bothers me so much. I can’t point my finger at it. Especially because I am all for girl power. But something about these broad strokes bothers me enough to complain about it louder and clearer each time I do talk about it.

The problem with generalizations is that it takes away from what truly deserves to be acknowledged. It is like if I do well at something, and somebody responds to me by saying “Of course you did well. I expected nothing less from you. What else could be the outcome.” While I understand the positive sentiment behind these statements, these positive & well-intended statements actually manage to take away from the part you played in your little victory.

We hear a lot of generalizations regarding boys & men. “Real men don’t cry” or “be a man” or anything that says that boys and men are a certain way. Except that it isn’t true. Men cry, just like women can be feisty. I understand the difference in physiology, anatomy, muscle mass, etc. of men versus women. I don’t deny facts. I don’t argue with science. But I get annoyed by incorrect notions that society puts on top of all the physiological and scientific facts. I hope my boy has the ability to cry (what kind of mum wishes this for her son…well my kind...I think crying is great and it does wonders for your system). Going by what he does today, he has ample ability to cry. Granted he is barely an 18 month old toddler. My point, Sir, is that real men do cry.

We hear a lot of such generalizations regarding down syndrome. “They are such sweet people.” “They are all very loving.” “They are emotionally very intelligent.” “They are all very nice people.” Except when they aren’t. Even if every single person with down syndrome that you have ever met fits in these buckets, such generalizations tend to take so much away from the person. Generalizing these qualities make people a number. A statistic. And what fun is that?! It isn’t any fun at all. I used to be ok with it. But as Samaira’s personality is developing, and she is turning out to be a hugger and a high EQ person, I can’t help but wonder at the person she is & the personality she has. I would hate to think that these awesome qualities that she has in her are attributed to her having down syndrome. Doesn’t make any sense, right? I would much rather give her the credit for who she is and what she will become.

Something about generalizations is very unfair. It takes away from the person and the personality. It gives less credit to who you are. It gives more credit to the unnecessary hearsay. If I ever do it, I try to pull myself back really hard. If I repeat it I try to remind myself in the strictest voice possible. This is one of the few (or many) things that is somewhat unacceptable to me. Let us see people, places and things for who\what they are, and not what they are expected to be.

Science is ok. Facts are ok. Traditions are ok. Humor is ok, most of the times. Emotions are ok. Liking is ok. Disliking is ok. Preferences are ok.


Stereotypes – no thank you, please.

Kids are confused about us taking their picture, again

My Positivity

The return of fall. I am beginning to see brown, yellow and orange leaves. It makes me feel like I am in a movie .

Monday, October 6, 2014

This month.

October is the down syndrome awareness month. While we don’t wait for this month to celebrate Samaira, or talk about her, we do take this opportunity to inform other people who may not know as much about this extra chromosome.

The best way to spread awareness and dispel myths about down syndrome is to let people know what we know. So far anyway. So here is what we know.

Sammy will be 3 very soon.

She is the most talkative toddler I have seen. We may not understand everything she says, but she is definitely having meaningful conversations most of the times.

Sammy has always had some level of sleep apnea. She got a tonsillectomy earlier this year to help her breath better, and the surgery did help her a lot.

Her favorite kind of play these days is pretend play. She will pick up her teddy bear or another toy and have conversations “teddy bear – you hungry? I give you milk. Teddy bear sleepy? I put teddy to sleep. Teddy bear wants a hug daddy!” You get the idea.

Sammy has three therapy sessions a week: speech, physical and special education/social. Most of these sessions are held at her day care.

Sammy knows we don’t like her doing certain things. We don’t want her to throw spoons and plates and food off the table. We don’t want her to pull anyone’s hair. So, she will do just that. And before we can respond in anyway, she responds “Sammy, don’t do that. It’s not ok.” At this point, we typically don’t know if we should feel good or bad. Hearing Sammy say those words is like listening to ourselves. It is a reminder of how kids pick up on the tiniest of the things we say and we do have to watch our words very carefully.

Sammy really cares for Rehan. And vice versa. While she pushes and pulls him all day long, she is very particular about ending all her fights with a hug and a simple “I love you, Rehan.”

Sammy has a hole in her heart. We will find out in a year or so if she needs a surgery to close it.

She loves listening to and singing rhymes and songs. All. Day. Long. Not that I am complaining. Her non-crying sound is like soft music to my ears.

The first words to come out of her mouth as soon as she wakes up in the morning are "ooohh…. whaaat is that?” Pointing at specifically nothing. It is quite cute actually.

There is a strong teacher-streak in Sammy. She likes to give instructions. “Rehan sit here.” “Rehan read a book.” Rehan go play.” “Mumma go to sleep.” “Quiet.”

She also happens to have a rather independent streak in her. We often hear her say “Daddy, go away. I do this.

She is One. Stubborn. Kid. I wonder who she gets this trait from!

Sammy loves to follow birds. Anywhere. Everywhere.

Oh, and the latest. She has started saying ‘please’ in a way that it is getting challenging for us to not succumb to it. Our conversations go like this. “Mumma, more pop corn.” “No Sammy. Pop-corn is all done. You don’t get any more pop-corn.” “Pleeeeease mumma” I challenge you to stay strong through that ‘please’

So there. Now you know almost as much about down syndrome as we do.

How do we explain down syndrome to others?

If I have to explain down syndrome to someone who is slightly older, then I will get into the details of 3 copies of the 21st chromosome, 47 chromosomes instead of 46, extra protein as a result of the extra chromosome strand, resulting in extra medical conditions, non-disjunction versus mosaic versus translocation down syndrome, congenital heart defects, hearing deficiency, developmental delays, speech challenges, thyroid, low muscle tone, distinct features, and so on.

But if I have to explain it to someone who won’t understand the unnecessarily complicated medical mumbo jumbo, then here is what I will say. Our body is made up of tiny cells, which in turn are made up of chromosomes. These chromosomes decide the color of our hair. They decide if our eyes will be big or small. Or brown or black. They decide if our hair will be curly or straight. They decide if we will have freckles or not. Similarly, chromosomes decide whether we have down syndrome or not. It can sometimes take more effort and work for an individual with down syndrome to do certain things. But it is on us to build a society that gives those opportunities. This condition makes an individual unique in their appearance and abilities. But it by no means defines them. Too philosophical? Hey, what else do you expect from someone like me? Especially when in my own head I think I have some sort of double PHD in philosophy.

All said and done, it is a game of attitude at the end of the day.

Our attitude decides how we are toward Sammy.

As far as our attitudes is concerned, we don’t put a cap on her limits or abilities to achieve anything in life. We never had any goals for either of our kids. We don’t have any specific dreams or aspirations for either of our kids. Except that they be happy. There is no specific expectation from them regarding what they should be, who they should become, what they should do, etc. So Sammy’s life, her abilities, her limits, will be completely defined and determined by her. And none of that will be a constant. It is going to continue to change and evolve all her life. I hope she knows that.

Our attitude regarding her health is somewhat similar. On an everyday basis, we do not attribute any of her medical challenges to her chromosomes. But then there are certain issues that are a result of the number of chromosomes in her body – the hole in heart, missing teeth, apnea, enlarged tonsils, etc. These are certain facts that do not escape even the most positive of the attitude and it is good to keep it real. Our challenges are very real and no amount of rainbows or unicorns or positive thinking will wash away those challenges. Medical or non-medical. For almost everything else, we completely forget her chromosome count while evaluating the cause and remedy. We explore her health issues just as we would Rehan’s. We process it like any other medical situation for any other child. Over time we could learn one way or the other. But as far as Sammy’s health goes, more often than not, we know more than her doctors. We know more than our parents. It is a side-effect of immersing ourselves in endless research on all related things!

Our friends’ and family’s attitude takes the cake.

We love this ecosystem. Of our family, friends, and Sammy’s teachers. The crazy amount our family and friends love Samaira is very present and evident in every word they say and every word they don’t say. Their unconditional love for Samaira screams and yells past their kind and excited shells. They genuinely care for Samaira and we know that. We feel the love through their presence and distance! Her day care teachers really do care for her. There is clearly a reason why Sammy is always so excited to go to and not so excited to leave her day care. Her therapists are her champions and we are so blessed for them.

And then there are other people’s attitude.

I am pretty sure some people’s view of life-of-a-family-with-a-special-needs-member is very different from that family’s view of their life-with-a-special-needs-member. While most people will be positive and open, there will be times when some people will react in less than ideal ways. There could be thoughts and comments ranging from ‘I am sorry’, ‘poor kid’, ‘thank God it didn’t happen to us’, ‘I don’t want to be in their position’, and so on. But let me tell you, life on this side of the fence is not bad, or sad, or sorry, or disappointing, or something to lament about.  It is a different life. Granted. It is a different frequency of doctor and therapist appointments. Granted. It is a different set of expectations regarding milestones and abilities. Granted. But once you have a member in your family with any special needs, these things don’t stand out as a “special” thing. These things just are. There is nothing special about it. It is special for the rest of the world. There is nothing extraordinary about it either. There is nothing heroic or awe-inspiring about it. There is nothing awesome or awful about it. It just is. Just like everything else in life. Does it make any sense?

So, do not ever hesitate to ask us any questions about down syndrome. We will not mind it. We will not be offended. It will not be an awkward question. It will be our honor and privilege to respond to your questions. So ask a question. Answer someone in doubt. Seek information. Dispel myths. Propagate reality.

An open minded and accepting society needs a strong foundation and it starts with being fearless, genuine and informed.

No Limits

My Positivity

Happy down syndrome awareness month people! It is a good month.