By Harps Kaur
When Saajan entered this world, much to our surprise, he came with a little something extra – he had Down’s syndrome.
To say we were devastated is an understatement. The grief and sheer shock that washed over me bought with it a wave of deep devastation as my mind was clouded with misjudgement. We grieved hard for those initial few days, weeks, months for the perfect baby we thought we were going to have. I was paralysed with fear as I was told that our lives would “never be the same” and that it would be “hard” by professionals who were basing their advice on outdated assumptions.
I was terrified. I wanted out.
What would our lives be? What did the future hold? What if he is a difficult child? Would he be a burden to Arjun, our eldest son? Would he live with us forever? Would we survive this?
My biggest source of guilt was wanting to give my eldest son a best friend, instead it felt like I’d birthed a burden. My heart was broken.
Amidst all the confusion, chaos and grief, was Arjun falling more and more in love with his baby brother as he viewed the world through a clear lens. No judgement. No expectation. The things I tried to mask that told the world he had Down’s syndrome, were the same things Arjun was cooing over, like his almond shaped eyes. By watching Arjun love Saajan unconditionally, he also taught us. Arjun loves Saajan so fiercely and is extremely protective of his little brother. He’s also his greatest cheerleader and is so excited by the progress Saajan makes.
During our rollercoaster journey of acceptance, we rode every single emotion – grief, anger, denial, anguish, depression, to finally come to a place of peace months later.
As time has gone on, living examples of people with Down’s syndrome have squashed the outdated perceptions and fears that I had. I’ve learnt that people with Down’s syndrome can live independently and achieve so much given the right support – it may just take them a little longer.
People with Down’s syndrome are smashing misconceptions by contributing to society more than ever – saving lives – Valerio from Italy saved a girl from drowning a few years ago; starting their own businesses – such as John Cronin who founded John’s Crazy Socks, or Collette Divitto’s own cookie business after being denied a job; staring in their own TV show – Born This Way; participating in the Special Olympics and thrashing them – Chelsea Werner; and there are even supermodels with Down’s syndrome such as Madeline Stuart! More recently huge companies such as River Island and Benefit Cosmetics have embraced individuality through fashion and beauty – a major breakthrough. Such cases fill me with so much hope for Saajan’s future. As time is moving on, people with Down’s syndrome are being recognised more and more for who they are and what they are capable of but we still have a long way to go!
Despite our initial fears, Saajan has slotted right in to our family – he is the glue that keeps us all together. He is so much more than just an extra copy of chromosome 21 and he’s more like us than different. He loves motorbikes like his daddy, he loves playing hot wheels with his big brother Arjun and he’s a foodie like me! He has bought us and so many around the world through social media so much joy just with his infections smile and zest for life. He depicts so many of the traits I wish I could have such as enjoying what’s in front of him and just being a happy go lucky kinda guy. He’s very caring and loves a good old dance!
Being from an Asian culture, I really worried about the reactions of others. How would our families react? Would I be blamed? Would he even be loved? I was grateful that both our families embraced our new journey and were our pillars of support and continue to be. Saajan is the apple of their eye and he is showered with so much love. We are so grateful to have an army of support behind us.
We did have the odd comment such as “we’ll pray he’ll get better” – though people mean well, it insinuates there is something wrong with Saajan. I use those opportunities to educate people that he’s not suffering, he’s happy, and that Down’s syndrome doesn’t require a cure.
Being someone that is a believer in God, my faith has always remained strong and I have always taken comfort in visiting the Gurdwara (Sikh temple). One of my biggest fears when Saajan was born was how he would fit in with the Sikh community. I struggled to bring myself to go to the Gurdwara as I worried about the stares, the unsaid words and the ignorance. However with time, I realised that it was me holding us back. Sometimes the fear and anxiety of how we think something will be, is far worse than the actual event.
I had to remind myself of the foundations of Sikhism and all that Guru Nanak Dev Ji (the first Guru) taught – we are all a creation of God and we are all equal regardless of any difference. By reminding myself of this daily, I felt more and more comfortable with the idea of taking Saajan – he has as much of a right to be there as anyone else.
Initially, I’d only take him if my husband was with me – he has always been a lot more confident than me with facing the world primarily because he isn’t scanning for people’s reactions! We now go to the temple frequently and I feel as much a part of the Sikh community as I ever have. No one has ever actually ever said anything negative to us at the temple, but I’m aware that as he gets older, there may be questions, and stares, but I’ll cross that bridge when it comes. I want the sangat (congregation) to grow with Saajan and to know him for who he is.
He loves going to the temple just as much as me – the enormity of the congregation hall, the harmony of the kirtan and the taste of the langar (free food for all those that visit the Gurdwara). My hope for the future is that he’ll participate in seva (selfless service) at the Gurdwara for example by helping to wash the dishes just like his big brother does. I truly believe the Gurdwara and other places of worship are a great setting for people with additional needs to be able to develop life skills.
Recently, Sri Guru Singh Sabha Gurdwara, Southall – our “home” Gurdwara and Ramgharia Gurdwara, Oswald Road, have supported us in raising awareness by supporting the #DownRightAmazing campaign that Saajan is a part of. This is a breakthrough for us as although I feel it’s harder to educate the older generation, our generation is certainly more clued on about additional needs and are more willing to learn and in turn more accepting. By having the support of Sikh temples, Saajan will be able to help educate and burst misconceptions and I hope will make it an inclusive environment by embracing all that Sikhism teaches us.
I have worked really hard to train myself not to get too lost in to looking in to the future and I have high hopes for Saajan – we will be right behind him supporting him in whatever choices he makes for the future. He has an army of supporters behind him. I have no doubt that he will achieve wonderful things but above all, my desire is for him to always stay happy and content.
He has and will continue to change the perceptions of those he encounters.
He’s slowed our lives right down and we are able to really be grateful for all the small things in life. He is exactly what our family needed but didn’t know. He IS perfect. He has enriched our lives more than I ever could have imagined the day he was born. Our lives aren’t over – they have only just begun. He has given us a new lease of life. We had a 1 in 100,000 chance of having a baby with Down’s syndrome – we were that 1, we hit the jackpot!
Saajan continues to prove to me that my fears were unfounded, HE is my greatest teacher. We are a pretty regular family, doing regular things and enjoying the ride! I worried about the impact having a child with Down’s syndrome would have on my family, but he has strengthen the relationship between my husband and I, he has given Arjun the opportunity to become the most well rounded human being and he has bought us all so incredibly close. Arjun and Saajan are literally each other’s breath – they are so close and they play and fight just like regular brothers – I had nothing to fear!
Our lives feel full, complete.
You can follow their journey at Instagram.com/BabyBrainMemoirs or Facebook.com/BabyBrainMemoirs