Down Syndrome Diaries | Our Journey … Through My Sister’s Lens

Where I’m currently struggling to find the words (over a year later!) to articulate my feelings and emotions from the day we received Saajan’s diagnosis, my sister is a lot more articulate as an outsider to the immediate situation. The boys are incredibly close to both sides of the family and without our families I’m not sure how we would have coped with everything. We are so grateful and blessed to have an immediate tight knit family that sees no different where it comes to Saajan’s Down Syndrome diagnosis – if anything, everyone finds that his extra chromosome makes him that little bit extra cute!

I don’t thank the family enough, especially my sisters who are literally my pillars of support, I guess it’s because I don’t feel that the words “thank you” do my gratitude any justice. I hope one day I’m given the opportunity to do for them, even half of what they’ve done for me!

They slept close by in the initial days, held my hand and did whatever they could to be there for me – even when they felt helpless. During Saajan’s open heart surgery, they kept us going, reminded us to eat, reminded us of the end goal. For Goov – I felt so much guilt as I knew her engagement was just a few weeks away, she should have been celebrating and walking on air to the build up of the most special time of her life – instead she was sat with us, praying, hoping and distracting us. I was so desperate to celebrate with her but I was too terrified to see past his surgery as I was so fearful that Saajan wouldn’t make it. To think, just a few weeks after his surgery, we were there with her is something that felt so far out of my reach when we were in the situation. I sometimes can’t believe what we’ve been through as a family.

Below, my sister Goov shares our journey through her own lens. I’m so honoured that she took time out to document the journey – it’s so interesting to read it from someone that was around to remind me of how things went down …

Saajan. Generally the name is known to mean “friend”. Couldn’t really be a more apt name for the little guy really, he is the happiest baby I’ve ever met. The day we were blessed with his arrival, we were babysitting Arjun as Harps had to go into hospital. He was SO excited to meet his baby brother, we were itching to get him to the hospital to meet the newest addition to his wonderful little family. When Preetam sent us a photo, we squealed with excitement – he looked just like Arjun when he was born but with the chubbiest cutest cheeks. My mum and dad were beaming with pride, wanting to see if Harps was okay and had got through the C-section better than she did the first time! Touch wood, all was well! Everything felt calmer and more relaxed compared to enduring the endless hours of her 84 hour labour when Arj was born. Arj wanted to get a present for his new brother so en route to the hospital, me and my twin Harv took him to Toys R Us (may I just add that I’m really happy that Arj was still part of a generation that got to experience running around like a hooligan at this store? I feel like it is a rite of passage as a child living near the huge superstore in Hayes!). After running around like hooligans, identifying a cute baby blue cuddly giraffe as the perfect baby brother gift, we rushed off to the hospital.

There’s nothing like meeting a newborn baby – such purity; such a contrast to the nerves I feel about holding such a dinky little human! Fear of dropping him, fear of making him cry, fear of just not doing it right. Having said this I feel like I became quite the pro when Arj was born so this time, I was much less scared and far more…”give me him I want to hug him and squish him!” He was absolutely adorable and so diddy compared to his big bro who was so sweet when he first met Saaj – “he’s so cute” he said *heart melts*. After a little while of getting to know our little man, changing a nappy or two and him having a good feed, Preetam went to grab a bite to eat with Harv and Arj whilst I stayed with Harps and Saaj. Harps looked amazing – especially compared to the last time, she looked sooo happy it was so lovely to see. She was telling us she felt complete and whole with her boys. In the evening, a lovely consultant came along. She was giving him the once over and then asked where baby’s daddy was. She asssured us that there was nothing to worry about but wanted him to come back, so we called Preetam. I left the room when he arrived. Myself and Harv waited outside of the ward. From that moment on, things seem a bit of a blur in my mind. I don’t know what to tell you other than Preetam came bursting through the doors, crying with Arj in his arms. He popped Arj into my lap and we were just in that heart-sinking-panic-stricken state of “what the hell is going on!????” Preetam ran back into the ward. Arj was obviously startled by what was going on around him but we quickly distracted him with our phones (gotta do what you gotta do). At this point I can’t even remember if Preetam told us or if Harv did (she had gone in to see if everything was okay because we were so worried, then she came out and could have told me through floods of tears) but within the next 5 minutes, I found out that Saajan had Down Syndrome. I’m not just saying this for the sake of it or because I feel I have to but of course I was so shocked by the news, I just did not feel sad about it. Not immediately. It was just a matter of…okay. Down Syndrome. I need to learn more.

I then went to see Harps and Preetam. Harps was crying whilst cradling Saajan – not the woman I’d seen earlier absolutely glowing. Seeing Preetam was the hardest. My dad, Preetam, Eamun – all the guys in our family are the calm ones that tell us to never panic, think logically, whatever happens, happens – quite the stoics. This time, Preetam was not himself. He was broken. Blaming himself. Questioning himself. Harps was comforting him. Because I’d always seen him being the strong one, it was surreal to see the roles reversed. I think it was at this point that I felt such sadness. Saajan lay there, as peaceful as ever. And the people that had brought him into this world were in shock and felt like their own world was going to fall apart. When you’ve been told that you had a 1 in 100,000 chance of having a child with a disability, some sort of developmental delay, some sort of societally-accepted idea of “abnormal”, it’s any wonder they reacted the way they did. It is just not what they had expected for their family or their life. To their dismay, they were also told at the same time that Saajan had to be taken down to NICU because his blood was too thick and needed to be thinned and monitored. His temperature was also too low. Looking back now, that was so unbelievably hard to see. To watch unfold. To see the little guy wired up. Now, it almost feels miniscule compared to what he had to go through 5 months later. I tear up as I write this because he was so amazing throughout. He was this living reminder that no problem is too big. That everything is going to be fine. That they can live a normal life – after a diagnosis of Down’s syndrome, after major open heart surgery.

I remember calling my now husband, Eamun, on the way home from the hospital and suddenly had tears streaming down my face. I remember saying, it’s not because he has Down’s. It was because they were so sad. It’s because they needed to be uplifted. It’s because they needed to be shown that their life was going to be just fine – maybe not without it’s own hurdles – but that the whole family were there with them through whatever was to come. One NYE 2016, I stayed with Harps at the hospital and watched the London skyline in the distance light up from the hospital ward window – not the most glam of NYE’s but one I’ll remember forever. Harps was in bed and was just not interested, total apathy. Where I thought we were safe from the dark clouds of postnatal depression, it was just revving itself up to come forward in full force. We’d just been to see Saaj downstairs in NICU to wish him goodnight and check all was well. The midwives in that unit were incredible. My heart could not withstand seeing those teeny tiny babies completely entwined in wires and cooped up in their incubators. Harps cuddled Saaj so closely, she asked how on earth we’d be doing my wedding the following September now, would he be able to walk? Would he be involved? What are we going to do? – such crazy thoughts given how amazingly well and involved the boys were at the wedding, doing their Masi so proud!!

I remember going back to work a few days later and having left before annual leave so excited that my nephew might be born over New Year’s, everyone asked how the birth went and if mummy and baby were okay. I remember saying “everything is fine, baby was born with Down’s”. The reaction of so many started like this – the look of oh gosh okay, not really sure what to say, not really sure what that means but congratulations!! Pretty much how a lot of people would naturally react and there was nothing wrong with that (I’m extremely fortunate that I work in such an amazing team who were a massive pillar of support in the last year!). But that was the first time I cried in front of people. Receiving that reaction was going to take some getting used to. And to be fair for a while it bloody irritated me (by no fault of anyone else)! My friends were quick to remind me that its human nature and I’d probably react that way if I was in their shoes.

Once Harps and Saaj came home, I spent a lot of time googling, researching like we all did, even my parents who are surprisingly tech-savvy for their generation! I purchased an e-book that had raving reviews – Bloom by Kelle Hampton. It detailed her journey when her daughter was born unexpectedly with their extra chromosome. I spent most of those first few weeks, reading, highlighting, screenshotting – sending to Harps and Preetam. To be honest I think it fell on deaf ears. But both agreed that they resonated with some of the sentiments in that book. I, as an aunty, masi, resonated with the book at the points where she described how her family felt. The next best thing that happened was stumbling on Sarah’s website – don’tbesorry.net. She was real, raw and to the point and was exactly what we all needed to see and read about. Her son, Oscar, was the perfect example of how there was no place for misconceptions about Down’s and that actually, as a parent, it’s what you make of it. As time has passed by, I truly believe the whole purpose of Harps ever starting this blog – even though she’d done it for nearly 2 years before Saajan’s arrival – was this. To spread awareness. To be one of the voices in our community (that being the occasionally judgey Asian one). To do good in the world for this. Several people have said the same to me recently without me even saying it myself! It’s even more apt that the way they told the world about their news was through Preetam, who always shies away from the world of social media, through the blog. It was making a bold statement and to this day I feel so proud of them for embracing it as they have. Even if it’s been slow and steady. From my point of view of how things have been, there have been bad days and very bad days. I think now there are definitely more good days. Predominantly good.

Saajan is now 1 and almost 3 months. He is flourishing in so many ways. His adorable personality is so infectious. I often find myself scrolling through all the pictures I have of him and oohing and awwing every time as if it’s the first time I ever saw the picture! His smile, my word, his smile!!!!! He’s developing at his own rate and no one is judging. We are just celebrating each milestone as it comes and appreciating things in a totally different way to before. In my eyes, the future can only be bright for Saaj. His parents are so ambitious; it’s inevitable that he will inherit that! I just want him to be healthy. I want him to be happy. I want him to have goals and know there’s nothing that can stop him from achieving them. Guess what? I just want what any normal human being wants for a child that they love! It doesn’t matter that he has Down’s. To us, he is just Saajan.