Down Syndrome Diaries | My Wish for Society

Though Kam may have had moments of heartache like most of us that have had an unexpected diagnosis, her faith has remained unwaivered. Her gentle mannerism and faith has led them on a beautiful journey of acceptance. Their gorgeous little boy Sehaj Singh radiates the same energy as his mama. Kam often reminds me to be patient, that there is no rush and that all Saajan needs is love.

One of the difficulties they too have faced is society’s ignorance and the sympathetic glares. Raising awareness amongst the Asian community is something I hope we can achieve together. Down Syndrome is sometimes viewed as a condition which impairs a human to achieve anything – the reality is far from it. However in order to succeed, they need to be given a chance. How much opportunity resides in places like the Gurdwara to be able to offer individuals with learning difficulties these chances? So much! But what support is there? Little.

We hope sharing Saajan’s journey and Sehaj as well as all the other stories we’ve shared here, open’s society’s eyes. Share these stories with your parents, your grandparents, your aunties and uncles and help us to raise awareness and thrash stereotypes!

Below, Kam shares their journey …

Sehaj Singh entered our lives on 3rd December 2014 late afternoon. The midwife placed him on me and the first thing I noticed about my gorgeous newborn was his eyes…the midwives then whisked him away for weighing. When I asked to hold my newborn again, I was requested to wait as they had a suspicion he had Trisomy 21. My husband and I just looked at each other, call it our lack of awareness or even our ignorance, we didn’t even know what Trisomy 21 was, and so our journey into Downs Syndrome began…

“Worrying does not take away tomorrow’s troubles, it takes away today’s peace”.

Fast forward to today, March 2018, and life is beautiful. However clichè that that may sound, life truly is, and we have found ‘acceptance’ to play a big role in making our life so beautiful. Acceptance and our faith in the Almighty. “Parenthood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding your child is exactly the person they are supposed to be. And, if you’re lucky, they might be the teacher who turns you into the person you’re supposed to be”.

Sehaj Singh was a newborn that needed love, care, patience and nurturing, just as any other typically developing child, Sehaj Singh had needs that were no different to other newborn’s needs. Yes, as he grows, there are certain features and traits that set him aside from other children, but that just adds to Sehaj Singh’s uniqueness and quirkiness. With continuous and unwavering love, care, patience and nurturing, Sehaj Singh will be exactly who he is meant to be. “A child is like a butterfly in the wind. Some can fly higher than others, but each one flies the best it can. Why compare one against the other? Each one is different. Each one is special. Each one is beautiful”.

I just wish, and live in the hope, that we can change our community’s view of children with disabilities and/or developmental delays. A disability is nothing to be sorry about, there is no need to give sympathetic glances our way, if you have a question, simply ask us. Please don’t make assumptions about how you think our life may be with a child who has Down’s Syndrome. It really isn’t as bad as you may think, actually, it isn’t bad at all! Sehaj Singh is our beautiful blessing in disguise and I wish you all could get to know him before you make any assumptions. Sehaj Singh is exactly how he should be, he was sent to us in his most perfect form, it’s our communities warped view of ‘perfection’ that may stop people from initially seeing that. “You don’t know what you don’t know, until you know it”

Sehaj Singh attends nursery five days a week, every afternoon and he loves it! We have been told Sehaj Singh is generous in showering his peers and adults alike with his warm and loving hugs and kisses whenever he sees them! Sehaj Singh is an extremely affectionate, caring and loving little man. “Love breeds love”.

Clearly evident for all to see is that Sehaj Singh has accumulated a few hobbies in his short 3 years thus far! He loves music, playing the tabla (indian drums), harmonium, visiting the Gurdwara (Sikh Temple), reading, painting, swimming, singing, dancing and playing with his favourite cars, his iPad (!), his keyboard and mike and having his picture taken are to name a few! Very typical don’t you think? Oh, and let’s not forget his epic tantrums!!!

“Parenting…strip it down and what do you really have? A relationship with a unique little person God entrusted to you to nurture, love and raise”.

God Bless!x

 

For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.