Everything happens for a reason

Dear readers,

It's almost down syndrome awareness month, and we couldn't be more excited. Thanks to our precious Laksh, this is our second year celebrating the unique and talented people with Down syndrome.

The more I think, the more I feel like Laksh and us were meant to happen no matter what. I know its silly but I always keep looking for omens, like God is trying to guide me through these signs. I am sure, you guys are aware that Down syndrome is caused by a third copy of the 21st chromosome, which incidentally happens to be my husband (3rd) and my birth date's (21st). If this isn't God telling us he got it, then I don't know what is.

God's favorite child

In today's time, children and adults with down syndrome are achieving so much and paving the path with success for all of us to follow. They are giving us "hope", something that unfortunately most of the medical world never does. You may have heard some doctors saying that your baby will always be happy, which some how paints them to be different than other kids. I have heard so many parents with typical kids telling me their kid is a happy child. How is that different from a baby with down syndrome being happy? And most importantly, your child will experience an array of emotions, just like anyone else. It is just that they might be easier to forgive you and move on. Live in the present and be kind. 

One thing that irritates me the most is how doctors let down syndrome define your child's life. Anything I say Laksh is feeling, the answer is because is has hypotonia. I remember once I asked his doctor about excessive salivation and she said he has low tone in his mouth, but in reality it was because he was teething. You have to remember that this news will not over power your life. In fact, in a while it will slide into the background and you will just have good and bad days like anyone else which has nothing to do with down syndrome and everything to do with having a baby. You may have heard of Mikayla Holmgren - the first Miss USA contestant with Down syndrome, she once said in an interview that she has down syndrome on the side. I absolutely loved that and feel that is the best way to make people realize how it is not what defines you but just something you happen to have.

Also, more recently a 19 year old with Down syndrome won an international beauty pageant. Read more about her here:

https://metro.co.uk/2018/08/20/girl-with-downs-syndrome-wins-international-beauty-pageant-7858920/

Could become a teacher, you never know

To mention a few more to make us see the ABILITY and not the disability in people.

Angela Bachiller from Spain became the first person with Down syndrome to ever be elected as a councilwoman

https://en.wikipedia.org/wiki/Ángela_Bachiller

Sujeet Desai from USA plays seven muscial instruments including the violin, piano, saxophone and trumpet

http://www.sujeet.com/

Megan McCormick from USA is the first person with Down syndrome to graduate with honors from a technical college

https://www.kentucky.com/news/local/community/article44423688.html

Pablo Pineda earned a bachelor’s degree in educational psychology and has gone on to be a writer, speaker, and actor.

https://en.wikipedia.org/wiki/Pablo_Pineda

Ruby Plachta is a 7 year old awesome kid living with her parents and older sister in Texas and has already helped so many adults with down syndrome to attend college. 

https://rubysrainbow.org/

Madeline Stuart is an Australian to become  the world's first professional model with Down syndrome. 
http://www.madelinestuartmodel.com/

Isabella Springmuhl Tejada is a 20-year-old fashion designer from Guatemala.
https://aplus.com/a/fashion-designer-with-down-syndrome-isabella-springmuhl?no_monetization=true

John Lee Cronin, a young man with Down syndrome is a co-founder John’s Crazy Socks
https://johnscrazysocks.com/

Laksh walking towards success while rocking his ponytail

These are just a few examples of how these young adults are shattering the image of what or how someone with Down syndrome should be. These talented individuals have so much determination that nothing can keep them down. Nothing can stop them and my Laksh from succeeding in life. All we need to do is believe. Thank you for reading. Remember to always be kind. 

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.

Our journey so far

I have been thinking about this for a while, 11 weeks exactly but no better time to start than during Down Syndrome awareness month. My son Laksh was born August 1st 2017 at 36 weeks gestation. All through pregnancy, some high risk doctors (one doctor in particular) kept scaring us into thinking my placenta isn't working , our baby boy isn't growing well (IUGR), I am starving my baby and that his heart might stop beating so I need to keep doing kick counts. (which would also just tell me he is fine at that moment). Turns out, my baby was growing perfectly well, but just not according to the growth charts they kept insisting he follow.

Thinking back to the day before he was born, we had just gone for my regular 36 week follow up appointment and was admitted due to low amniotic fluid and he was delivered via C-section the next morning. Damn that was quick. Once I heard his cry, I took a sigh of relief thinking now all our anxieties are over. The first thing the pediatrician told me was, " You know your baby has down syndrome, right?" Remember we had no markers during pregnancy and I remember telling her, you are talking about someone else's baby (even though we were the only one the in OR of course). Being a physical therapist, I have some knowledge about down syndrome and did not want that to be my son's reality. At least not at that time. I wanted to see my baby first. Not hear all this scary information. When my son was brought in the room, the pediatrician (I believe who was pregnant herself) came in and started demonstrating why she thinks he has down syndrome. She said, as you can see his eyes are almond shapes, his ears are oddly shaped, he has this single crease in his palm, and this gap in between his toe etc etc and all I kept thinking is, he looks perfect to me.


The next 24 hours were the best (even though I was in severe pain), I had my baby with me, could hold him without any wires or IV's, breast feed him without any concern of emesis, and just enjoy our special bond. I was in heaven until 8.30 in the morning when he threw up some green stuff (bile) and was instantly admitted to the NICU and later transferred to a more equipped NICU. That marked the start of our 2 month long stay in the NICU. I still remember when he was being wheeled into that scary looking transportation unit, I felt my heart would never heal. I was discharged the next day (one day early) and I went to the NICU where my son was right from the hospital. Took me 30 mins to walk 1000 feet but when I saw my baby, all pain was forgotten. 

Day 1 in the NICU

I remember the day we received confirmation of his diagnosis , I cried like I have never cried before. Mourning the loss of the child I thought I was having while never realizing that the child I do have is beyond perfect. He was also diagnosed with Hirschsrpung disease and needed surgery to remove part of his colon which wasn't working. The surgery was suppose to be 4 hours but ended up being 7 hours. The longest 7 hours of my life. Due to this he needed to be kept on the ventilator for another 12 hours. The sight of him laying there completely motionless is something I wouldn't wish on my worst enemy to have to endure. His surgeon did a fabulous job but 3 weeks post-op he developed adhesions and needed to be operated on again. He also got an IV burn on his left ankle which took almost 6 weeks to heal. 

IV burn on day 1, it got a whole lot worse before it healed

There were some good days, some very good days and some not so good days. Part of being in the NICU. I remember someone told me it would feel like a roller coaster ride. I did not understand or care about the analogy at first but towards the end, I understood what it meant. Here are some pictures of the good and very good days. 

Quality time with daddy, IV burn dressing on his ankle

The day we were told there might be a discharge in the near future

 Finally the day came when we were discharged after some training on feeding with a therapist. We are still on antibiotics, multivitamins, rectal dilatation twice a day but we are HOME. Recently got a wound infection on the site of incision, added another antibiotics to his schedule. My baby is so strong even when he is so tiny. It makes me realize that I need to be strong for him as well and need to share his story with the world. Hence, this blog. Hopefully I would be able to help a few others in the process like some amazing bloggers who have helped me.


Special mention:

https://rubysrainbow.org/blog/
http://kellehampton.com/blog
http://noahsdad.com/
https://themighty.com/
among many others.

All set to go home, 2 months and 2 days after birth. My precious baby.  A little something I feel fits the way I feel for you.

 “I didn’t fall in love with you. I walked into love with you, with my eyes wide open, choosing to take every step along the way. I do believe in fate and destiny, but I also believe we are only fated to do things we’d choose anyway. And I’d choose you, in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”  

                                                                                        — Kiersten White, The Chaos of Stars.

Also, a big thank you to the NICU team at Bellevue hospital.