God is good but are we?

Today, I came across this story of a beautiful baby girl called Norah Mae. She is this awesome and fierce girl who was born with Trisomy 13. Though she lived here for 5 days, her life continues to give strength to others. When I read her story that her mom writes at http://www.hellonorah.com/, I came to realize the strength these amazing mothers have. I also talked about this beautiful and strong baby Colton, who unfortunately passed away and is now in the arms of angels. His life has also been a source of encouragement and joy to so many others. You can read about him at https://www.facebook.com/ColtonStrongHeartWarrior/. These mothers and their extremely special babies have made me happy and yet made my cry so hard. I would sincerely like to thank you for the courage you showed and for sharing your stories with us. Thank you for letting us into your lives and giving us a chance to get to know your precious babies.


Since before I became a mother, I have always been very sensitive about what others say and very protective about myself and my loved ones. After Laksh came in our lives, these instincts are on a all time high. My heart aches so much for other mothers and their babies and it feels so much joy for them as well. Laksh has already taught us so much that most people take for granted, even most parents. Laksh showed us this whole new world filled with babies with different abilities and yet each one of them, simply perfect.

When Laksh was diagnosed after birth and had to spend over 60 days in the NICU, I remember struggling with it and being angry with the universe and God for doing this to my sweet baby. Everytime Laksh had to get his IV changed, or pricked and prodded;  he would cry for the longest time and my heart would break and my anger would grow. I hate to admit but I was angry at God. I thought that he was punishing my baby because of some fault of mine. At that time, I failed to realize that God is good and God is our creator. So if we hurt, he hurts. He would never hurt us and always trust Him, as only He knows what His plans are. Since then, I have come to believe very strongly in God's plan and believe He has a greater purpose for Laksh and us. I think, through Laksh, He is teaching us to be better people and through this blog, I am trying to share more about Laksh with the world.

Laksh has taught me how to see each person as an individual and to respect their choices. How we should try to understand their journey. How to be sensitive to others and what they are going through. Being grateful for what God thought you were able to handle and blessed you with. So let our babies teach us some very valuable lessons. Next time, when you see someone in need, be the one to help them. When you see someone grieving, try to be the one to comfort them, and if you can't at least do not add to it. When you see someone being treated unfairly, raise your voice for them. Even though, I know and believe that God is good, sometimes, I still wonder, then why do little babies have to die? Why do little babies have to suffer? Why do people have to go hungry when there is so much food in the world? Why are differences not celebrated but mocked and bullied? I hope someday, we get to see the world where kindness is not an unexpected gesture would simply the way to live.

Like mother like son

Its been a few days since I wrote. I feel like I am either running to doctor appointments, changing diapers, feeding, fighting sleep or crying coz I am away from Laksh at work. I have been trying to read this book (Bloom by Kelle Hampton; http://kellehampton.com/) for a while now and somehow managed to read only a few pages in the subway on my way to or from work. I feel like I should put a warning here though: "May lead to embarrassing and excessive crying so read in public at your own risk"

Thanks to a rather insensitive employer, I have suddenly come across some free time which I have now started using by spending some more quality time with my baby. Recently, we got some books for Laksh, some new and some hand me downs but great books nonetheless. My sister told me something she read in a book that stayed with me. Once we finish reading a book, we should just pass it along. Holding on to it holds negative energy. Spreading knowledge is good and keep only the books you are going to re read. Anyone who knows me know how much I love reading and how I am slowly and steadily building my personal library (don't know how I am going to follow the pass it along philosophy). Hoping that Laksh has taken after me in that sense, I have ventured on to this new path.

Some one on a FB page for moms told me about Jacks Basket and thanks to them, Laksh received this beautiful book about learning about colors. Just a side note, if you haven't already, check out Jack's basket. "Jack’s Basket is a 501(c)3 non profit organization that’s mission is to celebrate babies born with Down syndrome.  We strive to ensure that every new and expectant parent is provided resources and avenues of support within the community.  We aim to educate medical providers on how to discuss the diagnosis in an unbiased way in hopes that the birth of a child with Down syndrome is celebrated like any other." http://www.jacksbasket.org/

Anyway, so when I showed Laksh that book of colors, he was spell bound. He kept staring at the pages without blinking his eyes and just moving his eye balls side to side. How I wish I had taken a video but I was busy enjoying the moment. Cherishing how my little one might share this love of reading with his mumma. I say "might" because a small part of me does acknowledge it could just be the bright colors that had that effect on him. Testing my theory, I have now started reading to him in the afternoons if we are done with feeding, burping, diaper change, play time, tummy time etc and he is still alert. So this is day one of testing my theory.

we can always take a break from reading for a nice picture

I am so eager to learn things he may have picked up from me and things he may have taken from his daddy. I still get so amazed and ever so intrigued with the things a human body is capable of doing. So what if it gave my Laksh an extra chromosome, it did so only to make him extra special.

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.

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