World Down Syndrome Day

Dear readers,



Since Laksh came into our lives, so many things have happened, so many emotions have been felt and so many minds have been changed. As many of you might know, we received a birth diagnosis when Laksh was born and took some time to process the whole thing. But once all the feelings of being cheated on, and loss of the idea of a perfect baby were done with, I started relishing the love filled smiles that I wake up to every morning. Having a baby with special needs just makes us more appreciative of the things we would have otherwise taken for granted. Seeing your baby work hard to do things that typically growing babies do effortlessly and then giving you the best smile once they accomplish it, is worth everything. And, trust me, they will accomplish it, it might just take them a little longer at times.

We are lucky enough to have some amazing group of people we call family and friends that have always been supportive and encouraging. Being surrounded by people that love you for who you are and not what labels think you should be, is the best feeling. Thank you everyone for taking the time out to send us photographs wearing your coolest, funnest and most colorful socks to honor my precious baby and others like him. We are so grateful and appreciative of the love. You guys made our first #worlddownsyndromeday so special. Cheers. Keep loving and be kind.

Not the child one may want but definitely the child one needs

Dear readers,

It has been a while since I have been able to blog. Life has been busy and I am grateful but that meant not being able to blog for a while. In this time, lots of new developments have happened, some good and some disappointing.

The good ones first:

Laksh is almost 6 months old, I am so excited to be planning his half birthday. Can't believe my baby boy is almost 6 months old. How time flies, it is amazing. We also finally had a newborn/baby photo shoot for Laksh which turned out pretty well. Here are some glimpses of it

  

                           

And now the disappointing part:
A lot of people in the DS community may have already heard about the special of Tom Segura rightly named "Diagraceful" that is to be aired on Netflix where he makes a joke about the usage of the word, “retard” and how it is no longer politically correct and questions if one should say ‘a person with the extra 21’st chromosome’? My question to him is, when has bullying been regarded as humor? When has mocking at someone's differences made you stronger or funnier? Why is it that you find the need to target a group of people who have never said a mean word about anyone and all they ever want is to be treated as human beings, just like anyone else.
When a fellow mom from the Down Syndrome community commented on his social media page, conveying her distasteful reaction to what he calls art, in response, Mr. Segura commented, “Netflix, please don’t take my special down. That’d be so retarded.” He not only denied making an attempt to try and understand what he said wrong or its ramifications, he went on to say it again, in an attempt to appear "funny" . I think it is weak that you can only get a few laughs from people at the expense of someone else, and in this case, many such individuals who had nothing to do with it whatsoever. I have been a part of this community for a short time but as passionate as any one else. No one chooses to have a child with special needs, but one can always choose to love, choose to accept and choose to being kind. As a parent, you may understand the overprotective instinct that comes with the territory, the need to protect your child from the tiniest of troubles, the need to be his or her advocate and making sure your child gets all the good things life has to offer. 
It surprises me that despite being lucky enough to have a child, you aren't lucky enough to learn acceptance and kindness for them. I feel sorry for you and your ignorance. Having a child with down syndrome makes you privy of unconditional love and have a deep appreciation for happiness. Always remember if you decide to have another child, and that child is blessed with an extra chromosome, the same people you mock now, would welcome you with open arms. That is why I feel that we all need to have such a blessing bestowed upon us so we can learn what it actually means to live life to the fullest.

I would urge everyone to please sign the petition and contact Netflix yourself to rate Tom Segura’s “comedy” show. You can reach them at PR@netflix.com or contact the CEO Reed Hasting at rred.hastings@netflix.com. 

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.

New year; Old me?

Dear readers,

Happy 2018 everybody. Hope this year brings you all joy, love and good health, everything else will fall into place in time. I would like to thank everyone for their support so far and I hope to keep getting more love for Laksh and our little venture; this blog.

It seems like we just celebrated Christmas and in a blink of the eye, its already 2018. Christmas has always been the best part of the year. All the lights, and festivities around me always cheers me up. Recently, I have started to feel the need to start traditions, things that I want Laksh to look forward to. Things like, baking cookies for Christmas together, opening gifts Christmas morning, wearing matching family PJ's, taking family trips across the globe, taking a minute to reflect and being grateful, give to others what we can, being kind and smiling a lot.

I have never been the kind of person to wait for new year to make resolutions, if I want to change something I do it right away. I am also someone who likes to celebrate and capture every moment that I can, because that is what makes life worth living, at least that is what I feel. My sisters and I have always been those people who love to celebrate and cherish each other and the people around us.

January 1st marked the beginning of this year but for us, it also marked the day our baby boy turned 5 months old. We spent the day celebrating his 5 month birthday instead. Hubby and I baked a chocolate cake for Laksh and it was such a fun experience. This lead me to think of other ways to be able to have more fun, be responsible and also lead a more meaningful life. To live life and not merely exist.

• Read a book to Laksh every night
• Laugh at small things instead of getting angry 
• Try to get quality sleep time
• Family movie night with popcorn (pop corn not optional)
• Go for a brisk walk (even when its freezing cold)
• Listen to music and dance
• Lite a scented candle
• Drink more water
• Try new recipes
• Don't freak out over every small thing and go with the flow (more of me than anyone else)
• Give someone a compliment and mean it 
• Be helpful and kind to strangers
• Be more patient
• And remove the Christmas tree before the end of this month. 😉

As we start a new year, I hope people learn to be more tolerant, kind, open-minded, accepting, friendly, understanding, polite, and kind. I know I said kind twice, that’s how important it is. If there is only one thing you want to take away from this blog today, then let it be kindness.

You win some and you lose some

To call this year a roller coaster of emotions would be an understatement. With everything that has happened, I have come to realize and appreciate the importance of family (online and IRL). Laksh and us, are fortunate in that sense. 

Even before his birth, his grand parents and aunts had started planning trips to the states from India. Birth of a baby is always such a joyous time, and getting months and months to plan is such a blessing (even though most babies do what they want and don't really give a damn about our birth plan). Anyone of knows me would say I am not a very patient person and having to wait 9 whole months (no one tells you this, but its actually 10 calendar months) to see my munchkin is one of the hardest things I had to do, or so I thought.

Planning for your baby, especially your first one can be a fun yet a daunting process. For me, being a type A, instant gratification kinda person, I planned and planned and then planned some more for every scenario that I could think of except the one that actually happened. Life is funny that way. Isn't there a saying that goes something like, If you want to make God laugh, tell him your plans? 

 

With this year coming to an end, my parents have finally been able to make it to US to see my baby. Mom had come briefly back when he was in the NICU so with so many restrictions wasn't really able to spend time with Laksh. My dad wanted a boy to hang out with since my older sister was born 35 years ago and finally after 3 daughters and a grand daughter. here comes my darling Laksh. This picture of my dad and his baby boy is something I am going to hold on forever in my heart, and on the internet 😉.  I am my daddy's girl and this is such a beautiful sight for me, that my heart hurts with joy and gratitude. 

"Surely, two of the most satisfying experiences in life must be those of being a grandchild or a grand parent." 

Donald A Norber

  

Additionally, the end of this year marks saying good bye to his grand mother and aunt who are going back to India after being with Laksh since the time he was born. Farewells can be so hard even though they are temporary. Here are some pictures of Laksh with his aunt (dad's sister) and grand mother (dad's mom).

Laksh is now waiting to meet his other aunt and uncle, his two older sisters, his fur brother, and his two more mommies. Hopefully soon. So as we bid adieu to 2017, we also say good byes to some loved ones and welcome others. Until next time.

 Happy new year to everyone! Lots of love from Laksh and all of us. See you next year.

I absolutely cannot end this year without a special mention to the Murray family. My heart hurts for you and I cannot imagine how you are dealing with the loss of your precious baby. Colton, without ever meeting you, I have fallen in love sweetheart. You will forever be missed. For those who have not heard of him, here is a link to help you get to know what an awesome baby he was. God bless you Colton. 

https://www.facebook.com/ColtonStrongHeartWarrior/?ref=br_rs

Reminiscing...

Dear readers,

When we first found out I was pregnant, it was the start of this year. Now, with the year about to end, I realized how different our lives have become in a few short months. Earlier this year, I had imagined all these changes that would come with our baby being born. How being a mom would be the coolest thing ever. How all my baby would ever need is my husband and me (apart from milk, sleep, and diaper changes of course). How we would be sleep deprived because that is what I have seen parents of new born babies be on TV. But God had different plans.

Being overweight, all our lives, we are told things we won't be able to do. We won't be able to participate in sports, we won't look pretty, we won't be able to wear certain type of clothes, we won't be able to have a baby easily, etc etc. So even before we decided to get pregnant, I started losing weight so the doctors won't give me the same old lecture about how I won't have a smooth pregnancy because I am overweight.I even went to the OBGYN before for a pre-conception check up to make sure everything is okay. That is how scared I was of screwing up or being told I will screw up instead.

When we got pregnant, I was surprised to learn most doctors wont even see me till I am 10 weeks pregnant or more? I was so mad, because the first trimester is when you need the most reassurance as you still don't look pregnant or feel your baby. Morning sickness isn't a sign that everything is okay. So when we finally got to see a doctor, they did not even do an US yet because for that we needed another appointment so it was a while before we got to see our little baby on the screen. It is the best feeling ever. No words can describe how wonderful it is to see his tiny heart beating on the screen and knowing some day soon you will be able to hold him in your arms.

Anyway, first two trimesters of my pregnancy went smoothly. My blood pressure was fine and so was my blood glucose (the two things most doctors had warned me about). Actually, by the end of the second trimester, doctors had started scaring me all over again about how he isn't growing well and how I need to keep counting his kicks to make sure he is doing okay. Anyway, moving past all that, the day my baby was born and I heard his cry, oh my what a feeling. In that moment, I knew my life would forever belong to someone else.

Little did I know, we had a whole different journey in front of us. He needed surgeries and NICU stay before he needed his crib and all the wonderful things we got him. So now we have come to terms with the fact that he would sometimes need doctors and therapists more than he needs us. We need to understand, he would need to see the doctors more often than our friends kids might have to. Sometimes, he would need me to be his advocate along with being his mother. Sometimes, I would have to fight to get him what other kids get freely and easily. But that doesn't matter. What matters is he completes me and I would do anything for my baby boy.

Hope this year was everything you guys hoped for and the coming year even better.

One week to Christmas

Dear readers,

December has always been my favorite time of the year and Christmas my favorite holiday of all. I feel like no matter how stressed out you are, when you see Christmas lights all around you, happiness creeps in. I feel people are more kind and charitable this time of the year, though we should be kind all the time. Christmas for me always equals joy.

 Some of Laksh's first's from the last two months while we are waiting for Christmas to come.

Laksh's first snow fall

First time at shake shack

First time at one world:


                                                                                                                                                               

First time at the temple (no photography allowed inside)

First time at  the mall

First time with the famous Manhattan skyline

     

First time meeting Santa (preferred sleeping in daddy's arms instead)

Here is a pic of Laksh and daddy, chilling on a Sunday morning ❤

Happy Holidays! Please remember to be kind, especially this holiday season.