Tuesday, October 31, 2017

Are we doing things that bring us joy?

I was just reading Kelle Hampton's blog about Krista who is her intern who happens to have down syndrome. (http://kellehampton.com/blog) The things that Krista is learning in college make me feel both good and a little sad. I had dreams about my Laksh being able to achieve get success and sometimes realizing that he might have to learn skills to be able to live independently that usually comes naturally to most people is a little disheartening. That being said, some years ago, people with DS were institutionalized so this is definitely a move in the right direction.

Anyway, reading her blog, I stumbled upon the entry from today and realized "worrying about things beyond our control" is not something that only I am inflicted with. But her friend did ask a very important question, " Are we doing things that bring us joy?' When I tried answering this question, I realized my answer is no for the most part. We are in that phase of life, where Hubby and I are struggling between trying to make a decent living so we can provide for our baby. In this day to day struggle, we are forgetting to take a minute to enjoy the small things (yes yes I am a fan).

Most of the times, we are just running through the motions and not actually living life. I sometimes see how my friends are managing to travel (a passion of mine) but I am not even able to go to the movies. I want to do so much and yet somehow I end up doing nothing. All I am doing is, going to work and managing to be able to find time to spend with my son. I hate that I don't have the freedom to be able to take time off work or just take a little sabbatical.

I am now deciding that we will do one fun thing every day. It does not matter how grand or how simple that thing is, but we will do it. It does not matter if anyone wants to join us or not but we will do it. As a family, we will do things that bring us joy because that is what life is made up of. Small moments of joy. Good night readers.

                                                    🎃 Happy Halloween 🎃

Monday, October 30, 2017

Is it down syndrome or he is just being a baby?

Laksh is almost 3 months old. As I have mentioned before, we are waiting for his EIP to start and in the meanwhile we have follow ups with his GI surgeon, cardiology, ENT and regular pediatrician to keep us busy. This being my first baby, I find myself tempted to google what a three month old baby can do and then compare it and see what our baby is doing but then I stop myself. I know that is a rabbit hole, and if I fall into it, I am only going to fall deeper and deeper. 

Sometimes when I look at Laksh I wonder, is he looking too dazed or is he just being a baby? Is it his down syndrome that is making him not interested in smiling often or is he just being a baby? Every time he doesn't eat his entire meal, I worry if it is something to do with his abdominal surgery or he is just being a baby? Every time he doesn't respond to my voice I wonder, is it his down syndrome or is he just being a baby?


Every time he is awake, I wonder should I keep talking to him so he can learn more or is it okay to be content in just hanging out with him once in a while? Every time he is on the boppy I feel should I give him something to play with so he is working on his fine motor skills or is it okay be content in just hanging out with him once in a while? Whenever I lay him down to change his diaper, do I need to keep his brain stimulated by playing Mozart lullabies or is it okay be content in just hanging out with him once in a while?

I accept that there have been days where I forget he has down syndrome or that it is just a small part of who is that it does not even matter but then there are days where it seems so prominent in everything he does. When people talk about how tall he would be because his parents are tall, I wonder would that still be true as down syndrome tends to affect overall growth? When people say how smart he would be as his parents are highly educated, I wonder would that still be true as down syndrome tends to affect overall cognition? With so many thoughts running in my mind that unfortunately I forget to get amazed by this tiny miracle that God helped us create. Now a days, whenever my mind starts to wander, I remind myself to not put any limitations on him and believe in him. He can achieve whatever he sets his mind to because he is amazing and no such thing as an extra chromosome can stop him. If anything this extra chromosome is what is going to help him be him.

Friday, October 27, 2017

The light of my life

I know my last blog was a bit more focused on me and less on Laksh. I promise I will do a better job of talking more about him and his day than me.

October 19th 2017 was my baby's first Diwali (For those readers who are not familiar with Diwali, here is a website that beautifully explains it; http://www.diwalifestival.org/diwali-in-history.html ). Diwali has always been one of my most favorite time of the year, second to Christmas of course.

That day started like any other. Laksh woke up 3 times in the night to feed or get changed or just to snuggle (like he does every day). He did not know this is a big day for him but I did. In my head, I was trying to figure out a way to make this Diwali special for him. Of course, he is too young to know what it means just yet but I still wanted this to be something awesome for him to look back to.

As the day went by, Laksh and I got caught up in our day to day activities and the focus on Diwali kept slipping. Diwali is where spring cleaning meets Christmas but neither was the house clean nor was it brightly lit up. Hubby was at work and I was enjoying the last of my unpaid maternity leave with Laksh (that is a whole other discussion) when I got a minute to breathe and saw the clock. It was already 4.30, Hubby was still at work and everyone else was napping (excluding Laksh of course). I called hubby and asked him to leave quickly while I started deep cleaning the apartment like that is the last thing I would do. In two hours, we had the apartment cleaned up and decorated, sweets made for the pooja, and showered and dressed up versions of ourselves were ready as well.

Electric tea light candles and string lights

Paper lanterns placed all over the apartment

Laksh's first Diwali gift from his older sister Sheen
Sweets for pooja and the mandir

            My mother (type A personality just like me) bought us some matching traditional outfits to wear

Then began the pooja (prayers) and celebrations. If we would have been in India, we would have lit some firecrackers as well. Did I forget to mention firecrackers? Well in that case, Diwali is mix of Christmas, 4th of July and Spring cleaning with plenty of firecrackers (which now I am against, global warming and all).

We got so caught in these minute preparations that we simply forgot to cook any dinner. In a way we started (or were forced to start out of severe hunger) our own tradition of eating out. Diwali dinner would be a 'family dinner' just not in the house. When Laksh is older, we will tell him how well thought out his first Diwali celebrations were and how we intentionally started this tradition of eating out.

Diwali is a symbol of triumph of good over evil and light over darkness. In a similar fashion, my precious baby has helped me replace all the darkness that years of ignorance had created with the light of awareness and acceptance. Thank you my preciousness.

Memories of moments celebrated together…….
Moments that have been attached in my heart, forever…….
Make me appreciate you even more this Diwali.
Hope this Diwali brings in Good Fortune & Abounding Happiness for you my darling boy!

PS, adding some pics about his first Bhai Dhuj as well (http://www.hindustanlink.com/festival/bhai-duj-history.htm)

Tuesday, October 24, 2017

They say it takes a village.

My son is 12 weeks today and has been out of the NICU for almost 3 weeks. Thank God. These 3 weeks have been a whirlwind of crazy for me. Most of which has been good crazy but some, not so good. While my son was in the NICU often times I found myself sad and confused. Motherhood is supposed to be this awesome part of your life or so I thought. Well-wishers kept warning me about post-partum depression and in a way made me feel I could really be going through it. I love my son more than I ever thought I was capable of loving another human being. I am in awe of this tiny little miracle I helped create, this little piece of me. But hoping that he would fix all the stress that a NICU stay can bring is too steep a price to ask, isn’t it? I now realize, I was depressed but anyone would be. Having your new born baby diagnosed with Down syndrome in the OR even before you get to see him and then taken to the NICU for surgeries without giving you a minute to breathe or absorb this information can make anyone feel overwhelmed and left feeling a little lost.

I am not the kind of person who confides in people easily (ironic how I am now writing a blog about it), so this is very hard for me. There are very few people in my life that I can say anything to, without the fear of being judged or misunderstood. There are so many things that I am confused about but unable to talk about it with anyone for the fear of my words being misconstrued. I don’t understand how people forget to respect your privacy just because you are a mother who is breastfeeding. I dislike that people just walk-in while you are pumping and then just shrug or sometimes even sit to chat with you. I also don’t appreciate how people come to help you but the only thing they actually do this hold your baby while you are running around trying to manage everything. Most often, people forget that your body also needs rest and you need time to bond with this baby you have been carrying inside of you for 9 months. I hate when people don’t give you the time or space to do so. If you worry too much about your baby, you are being a helicopter mom. If you are less fussy then you are being a careless mom. What kinda mom shaming is this? Why can’t we let every woman decide what kinda mother she wants to be? And, as long as she isn’t harming her baby, leave her be.

I am fortunate enough to have a loving family that could take time out to be with me but sometimes this support can get overwhelming too. I am seeing how having my in laws here has forced my husband to try and balance between being a good son, a good father, a good employee, a good brother, and a good husband. One can’t successfully be good at everything at the same time. We as human beings always see our problems as big and fail to empathize with others. Sometimes, I expect my loved ones to read my mind and understand when I need them to support me and when I need them to back off. That is unfair.

I don’t think we need a village to help raise a baby; we need loving and caring parents who are given a chance to figure it out. We need a society where people respect other people’s choices. People understand that not everyone can be the way you are, and not everyone gets it right from the get go. Be patient. Be understanding. Don’t try to make everyone a copy of yourself. See the differences and appreciate them, learn from them and thrive in them. Our differences are what make us more beautiful.

Peace out

Monday, October 23, 2017

First day in a park

Rattle struggles
I have been thinking about different things that I can do to make sure my baby gets all the help he needs and all the support I can summon. Trying to come up with creative and fun ways to get some exercises started while we wait for his early intervention to start (evaluation happening soon). That being said, he is not even three months old so all he really wants to do right now is eat, sleep and repeat (with pooping in between of course). But as he is getting older, he stays up for longer and I am bored of just the play mat or the music mobile or trying to get him to hold a rattle constantly worrying he might throw it on his face.

Waiting patiently to be taken to the park

One such afternoon, it was nice and sunny outside while Laksh and I were sitting inside trying to find activities to do. We rocked some tummy time, spend time kicking the key board on his fisher price play mat and also tried playing with the rattle for a bit. We were also done with his body massage and bath time. Now, I had him on a boppy and was playing some Mozart lullaby for him trying to get him to sleep. Suddenly, I realized we could go to the park. Not sure what we would do there because he isn't old enough to sit on the swings yet. I quickly got him all bundled up and strapped in the stroller while willing him to stay up. He kept looking around trying to figure out what in hell's name is happening suddenly. Why is my mom running around like a headless chicken frantically trying to get my diaper bag ready for this last minute excursion. As a new mom, the only thing I don't carry on trips is his crib. I know I know,  by the time we have a second baby I would be a pro and might just leave with a spare diaper tucked into my jeans but for now its going to be this way.

Once he was all secure in the seat, we breezed out and practically ran to the park which is just a couple of blocks from our apartment. All the while I am talking to him trying to keep him interested enough to stay awake. As we make our way to the park, I notice his eyelids getting heavier and his blinking getting longer, as in the 'eyes closed' part of the blink kept getting longer and longer. By the time, we made our grand entry to the park of course he had fallen asleep. His aunt and I looked at each other and wondered now what? Well, we got some nice 'Vitamin D time' for him while the two of us, video called all of our family members showing them how he is rocking his first day in the park. We exchanged smiles with other parents whose children we actually playing in the park. At some point, I thought if only there was a nice patch of thick green grass, we could get him down on the blanket and let him relax in some fresh air. But as you can see, in this concrete jungle, most of the parks follow a similar theme.

I sat there contemplating his future (like I find myself doing more often these days) and scared of the unknown. Thinking of other parents who have raised a child with down syndrome before us and of parents yet to come. Thinking of not so good things that doctors and other people have told me. I remember one OBGYN telling me, some kids with down syndrome are able to read, walk, talk and be some what independent these days. One parent with a 26 year old told me how her child can read at grade 4 level and I thought to myself, this is not okay. I want my baby to be able to do everything in life to the fullest and not be okay with these limitations society and medical professionals are keen on implementing on them. Every day, I see others kids doing so well with inclusion  (thanks to https://rubysrainbow.org/ I am aware of this fact) and keep thinking when Laksh would start school, will we be able to find such a school or will I be able to convince the school to become inclusive and help mold a more productive environment for learning. I am his advocate and I want to create a world full of opportunities for him and not hurdles.

Anyway, after sitting there for some more time, I pushed all these thoughts to the back into the 'dwell on later' part of my brain. We decided to walk around to get some exercise for ourselves, while he continues to nap. As we started walking and making our way out of the park, he starts to stir. Little did I know, the only way to get him up is to physically be outside the park. Once we were safely outside the park, my little one wakes up giving me the stink eye.

It has been a while now since we left for our mini adventure so we continue making our way back to our apartment. When we reach home, and I remove him from the stroller I realize the stink was not limited to just his eye but also his tushy. Yes, my precious baby made history in his debut trip to the park. He did not do anything kids usually do in the park and it seemed like he preferred being any where but the park. The only thing he did in the park is sleep. He did his own thing. I know this may not be a big deal but in doing so, he made his realize that he is going to create his own path and it is okay. Everything is going to be just fine. He teaches me how to enjoy the small things and live in the moment.

Leaving you guys with this beautiful quote I read online.

The moment a child is born,
the mother is also born.
She never existed before.
The woman existed, but the mother, never.
A mother is something absolutely new.


To the makers of the movie Mimi

First of all, I would like to thank you for opening the dialogue about Down syndrome in our Indian society.  Thank you for showing that a ch...