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.

Wonderfully made, wonderfully me!

Just wanted to share this storybook I came across called Wonderfully Made Wonderfully Me by Brandi Berkhimer. I instantly fell in love with it. A lot of times people wonder, if there is a way to explain to children what down syndrome is. Well, I think this is a wonderful way to do so. It is simple yet beautiful. Talks about the differences yet highlights the perfections. I also feel adults have preconceived ideas but children are more accepting. As kids mature, new experiences might invite further discussions. Maybe they would notice some unique features that would need a more in detail discussion about how each of us is made differently. I feel this book is a good place to start.

Here is a sneak peak into the book and a link where you can buy it.

Wonderfully Made Wonderfully ME! Seek & Find Storybook (My Little Sunshine Face) (Volume 4) https://www.amazon.com/dp/1537726846/ref=cm_sw_r_cp_apa_u16gAbNQ9D36N

I want to take this moment to thank God for making my baby Laksh perfect as can be and thank writers like Brandi Berkhimer for making this beautiful book.

21 things I am grateful for this Thanksgiving

In this busy life, it is easy to forget what things we have going for us and keep focusing on things that are not. For instance, focusing on not getting the promotion you were gunning for and forgetting to be grateful for having a job. Getting upset over not being able to get that branded bag but forgetting to be grateful for the other bags you already have. Crying over baby having diagnosed with down syndrome at birth instead of being grateful for this tiny miracle you created.(see what I did there 👶❤)

I know this blog is not completely from Laksh's point of view or even fully about him like it usually is, but I needed to put this in writing for him to see when he grows up. It being thanksgiving weekend, I decided to come up with reasons 21 that I am thankful/grateful for this life that God gave us. (21 has become my most favorite number recently, oh & also, it is my birth date)

1. We have Laksh and he has us
2. We have a roof over our heads
3. We have food in our bellies
4. We have love in our house
5. We have people that care about us
6. Laksh has both sets of grand parents
7. Laksh has two older sisters (cousins but closer than the real deal), aunts and uncles
8. Laksh has a fur brother
9. We are healthy
10. We have an amazing online DS community, our extended family
11. We have jobs so we can provide for our baby
12. We have access to great medical care
13. We became parents
14. We saw his first smile
15. We heard his first cry
16. We celebrated his first Rakhsha Bandhan
17. We celebrated his first Diwali
18. We celebrated his first Bhai Dhuj
19. We celebrated his first Halloween 
20. We celebrated his first thanksgving
21. And last but not least, we will have the rest of our lives to see his many firsts and seconds and more.

Never forget to be kind to others as kindness is all that matters. Happy Thanksgiving from our family to yours.

Sneak Peak into Laksh's PT session

So Laksh's day started with finally getting sleep after daddy left for work at 7 in the morning. Past two nights he has been waking up every other hour and only sleeps after daddy or I carry him around the room. Yes, it has been super fun getting "the middle of the night exercise". Laksh is making sure mummy gets some walking done, even if it is at 3 in the morning.

So getting back to the point of this blog, Laksh had his PT appointment at 10 this morning instead of his usual 2 pm. So the oversleeping of sorts did not help our case. Laksh and I woke up at 9 (basically slept for 2 hours but 9 is still late for us). Quickly, Laksh and I finished his morning routine and had him changed (diaper and clothes). We were done with his feeding in record time, it was like he sensed the urgency flowing through me and decided to help. He is a good baby.

His PT is very prompt and was here exactly at 10. Today was his 3rd session and Laksh is already showing interest in his exercises and some progress. I have mentioned that before but in case this is the first blog of mine that you are reading, I am a physical therapist and have been doing some exercises for Laksh at home. I also ordered a big red ball for him and have been doing some core strengthening on it.

So today I finally remembered to ask the PT permission to take pictures in the PT session and he agreed so finally I can show what he is doing. First we do some general range of motion exercises for both upper and lower limbs along with scoping (which is mild traction and retraction of larger joints). Followed by rolling and half sitting, make sure that he is sitting at no more than 45 degree.

                                                                                    

                                 

                     

Moving on to some tummy time with he is hands in front of him, kind of getting him geared for crawling.

sorry its a bit blurred but he kept moving ;)

After rocking his tummy time, we then moved onto the big red ball where he did some bouncing, side to side movement, front and back movements and then rolling on it. This was followed by some tummy time on the ball as well. Most of these exercises are aimed at core strengthening and improving head control.

And, I finally took time to learn how to add videos so here are some on the ball. (BTW, it was super simple, literally had to just click the icon that said video. If only I had looked earlier.)

This is my darling baby chilling after a 45 mins nap post exercise

And my cheerleader while I was writing this blog

Hope this has helped. Please feel free to ask questions. Happy Holidays!

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.

Welcome to Holland

Recently we posted on Facebook and messaged most of our family and friends about Laksh’s diagnosis. We wanted to post it before the end of Down syndrome awareness month so chose the 31^st October. As expected, most of the people we know were surprised (not as much as we were) with our post but despite that supported us a lot. The common theme being, “you are brave” and ‘he is lucky”. I understand that it is very nice of people to say that but honestly, I wonder why we are called brave for loving our child. Isn’t that something we are supposed to do? Just because he was born with a little something extra, does that mean we are now brave just for loving him? Also, he is three months old and has already taught my Husband and I so many things. He has taught us how to be open, how to be honest, how to focus on the small victories, how to be kind, how to appreciate the differences, how to truly love someone unconditionally. He has taught us all this and he is 3 months old.

Again, I understand that it would be difficult to know what to say and these are among the better things that people have said. One person commented that he does not look like he has DS. I felt like telling them, why would we make this up? But instead, thanks to Laksh, I learned to be nice and only showed gratitude.

A friend messaged me something that I really liked (though part of his text did mention brave and lucky). He said, “Laksh is lucky to have parents like both of you. Ds or not, every child has challenges which Laksh will also have and overcome them with your help and guidance. He will make both of you proud. Being a parent I can understand how difficult it would be to talk about these things. You are brave to face your issues head on; maybe I would not have handled things so gracefully. Good luck to you and lots of love to Laksh.”

Another friend texted, “Hey, just happened to read your post on Down syndrome and the fact that Laksh was diagnosed with it. While I know very little about it and honestly don't know what to say but it was very heartening to read your post. Glad that you are spreading awareness about it and most importantly like you said, "Let’s celebrate life and all forms it comes in!"

I love how open people are to learn and how it is different from what it was some years ago. I realize that when we were pregnant, we had envisioned a very normal and kinda boring journey as parents, but thanks to Laksh we came to understand how amazingly fun this journey can be . Welcome to Holland. (http://www.our-kids.org/Archives/Holland.html)

My daddy strongest

Hello dear readers. It has been a minute since we found out about Laksh's diagnosis and another since we accepted it. It has always been a little easier on my husband. I would like to argue because he had no idea what down syndrome is but the truth is, it is because he knows what it is to be a father. 

Right from the first time my husband and Laksh saw each other, it was clear that theirs would be a bond to be proud of and sometimes envy as well. "The heart of a father is the masterpiece of nature."- Antoine-François Prévost, I have come to realize how true this is. I remember when we first found out, I was still being a negative Nancy (sorry if there are any Nancy's reading this, no offense intended 😊) and kept telling my husband things our baby might not be able to do. Every time I would say something he might not be able to do my husband would tell me another way of getting that thing done or how it might not even be something Laksh wants to do. Like, I told him Laksh will not be able to drive a car (which I now know is not necessarily true) and he said I will get him a driver. I realized in that moment, how lucky Laksh and I are to have such an amazing man in our lives.

He sleeps the best in daddies arms. He loves hearing daddy sing to him or even just discuss the traffic. He loves when daddy is the one who wakes him up in the morning or in the middle of the night. He loves when daddy reads to him or when daddy brings new toys for him.

                      

The love a father has for his son, a small version of himself, is so beautiful to witness and so pure of heart. I m excited about the our future as I have been blessed with an amazing husband and an amazing son.

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.