This is not coming from an overly mushy-gushy-coochy-coo kind of a mom, which (shockingly) I totally am. This is coming more from a place where a first time mom is trying to figure out the uniqueness and quirks of her new born child. There are so many times when I wonder if what I am seeing with Samaira is common amongst all new born kids, or is it because she was born 5 weeks early, or is it because she has down syndrome. Be it her feeding, pooping, weight gain, height, breathing, rashes, snorting, squinting, physical characteristics, cry, smile, anything. This is also because she is my first child. This is also because I haven’t been so close to another new born in my life. I am really close and attached to my two nieces, but somehow I wasn’t really tracking their milestones. So I, pretty much, have no one to compare her with, and no previous experience or bias to base things against. I have a super vague idea of when kids (without down syndrome) start lifting their heads, sitting, crawling, walking, talking, etc. But I have also seen a wide variation even within that standard range. That is why there is no one like Samaira, and no one I can compare her with. And in a way, I am glad this is how it is.
A lot of kids who have down syndrome don’t show all the features, signs and traits right away. When I look at Samaira, I don’t see down syndrome in her face. Even though she has a lot of those features, they are relatively subtle at this point, at least for the untrained eye. I spend a good chunk of my day youtubing kids and adults with down syndrome – hearing and reading their stories. I am reading about what they can and cannot do, what they look like, how they talk, how they walk, what they feel, what they need, and so on. Doing so keeps it real for me, yet it makes me very vulnerable. It reminds me that I may not see a lot of those traits in her right away, but they will slowly and gradually reveal themselves. I will have time to grow with Samaira as those traits start showing. But keeping that perspective right now breaks my heart. I am just hoping it makes me stronger, strong enough to embrace everything that is about to come, strong enough to be Samaira’s strength. I am scared, a lot of times. I worry about the unknowns – how severe will her down syndrome be, will she able to walk fine, what kind of speech issues will she have, will she be able to communicate fine, will she find good friends & teachers, will she lead a happy & healthy life, and so on. And I worry about the knowns – whatever I do know.
Based on all my reading so far – parents can’t stop raving about what a blessing their child with down syndrome has been. How they are better people because of that child. How that child brings in so much happiness in their lives. And almost all the parents whose babies are slightly older (a year, and older) say “If we knew then what we know now, we wouldn’t have felt the sadness on receiving the diagnosis, we wouldn’t have felt the loss of a dream, we wouldn’t have felt insecure about our baby’s future, career & life. We wouldn’t change a thing about her/him. ” Honestly, I don’t know what they are talking about. This diagnosis is heart breaking. And it will be heart breaking till the last day of my life. It is not heart breaking for what my life will be. That is not even the point. But it is heart breaking for the challenges that Samaira will have to face, above and beyond all other kids her age. If there is one thing I could change about the past, it would be those 10 minutes when the nurse told us about Samaira's karyotype test order for down syndrome. I sometimes wonder if this feeling will prevent me from accepting Samaira 100%. My only and ultimate remedy for all this negativity is Samaira. I look at her and all I feel is love for her. I just hope fear and apprehension don’t take over some day, especially as she gets older and things become more challenging. I hope not. And in my heart, I know not.
I don’t believe in God any more (definitely not) or any less because of Samaira’s diagnosis. I don’t feel the need to pray more for things or my feelings to be ok. I am getting my strength from Samaira & Siddharth, and our families, relatives & friends - who care for and love her unconditionally. At the end of the day it was a matter of chance, with a certain probability attached to it. My emotional reaction was “Why her?”, but my statistical reaction was “Why not? Even if there was a <1% probability of it happening, mathematically it is possible to be that 1%. And that’s what happened”. Stupid probability.
I don’t think praying to God any more will change or heal or fix anything. I do believe in 100% dedication to Samaira. I do believe in attempting to raise Samaira to be a strong person, so she can take on the world and life, come what may. I hope for her to not be a victim of bullying or teasing. And even if she is, then hope that she has the strength and the courage to fight back and put those meanies in their place. I hope for her to embrace her life with full enthusiasm. I hope for her to be a brave and bold girl, someone who speaks her mind, stands up for what she feels is right (even though it may be the wrong thing) and has the heart to love. I hope for her to make lots of friends, genuine ones, people she can share her ups and downs with. I hope for her to be happy in life. I hope for her to not be hurt. Ever. I hope to be her best friend. I hope to love and cherish her.
I typed this entire post while she was sleeping on my chest. It is the best feeling ever. There truly is no one like my baby!