Category: Down’s Syndrome Awareness

Since having Saajan, I’m given daily inspiration from the beautiful stories I see all over social media showing that people with Down’s Syndrome can lead pretty normal and fulfilling lives given the right support. When I saw the title “Man says father with Down’s Syndrome inspired him to be the best person possible” pop up on my news feed, my heart skipped a beat and I had to re-read it as I couldn’t quite believe it. It’s a known fact that most males with Down’s Syndrome are infertile. So to see a story written by a son of a father who happens to have Down’s Syndrome is pretty remarkable. More than the fact that Mr Issa was able to have children, the entire story is maybe the most heart-warming and inspirational story I’ve heard. Not only because Mr Issa (Sader’s father) went against all odds and fathered a son, but also because of how more alike than different he is to a strong family man who may not have Down’s Syndrome – where he has worked so hard to provide for his family and so that his son can have a sound education, where he has a solid relationship with family and friends and where he has a loving marriage where they ride the typical motions that most couples do! Mr Issa has achieved more in his life time than some living without an extra chromosome have. I reached out to Sader as I really wanted to hear more. Hearing Sader’s story about his father, Mr Issa, touched me so deeply and made me realise the future is as much Saajan’s as it is anyone elses. Thank you Sader for sharing more about your beautiful family and for making me realise that Down’s Syndrome or not, both Arjun and Saajan are incharge of their own destiny no matter what hurdles they may face! Here’s what Sader shared with me …

I am a dentistry student who loves sports like swimming and bodybuilding. I’m a pretty regular guy who likes watching movies and spending time with my friends. I currently live at home with my parents in Syria. My father has four brothers and three sisters and he is treated with love and respect by his family despite being born with Down’s Syndrome. My mother and father were introduced through family and I think it was pretty much love at first site! He is treated with love and respect by my mother’s family and by all the people who know him. My father works hard in a wheat factory where he has worked for the last 25 years, 6 days a week. In the winter, he is in charge of selling the products that are produced in the summer. In the summer, he works on a machine that grinds the wheat. We are a pretty regular family. My mother is a housewife and works hard at maintaining the house while my father is out to work and I am focusing on my studies at the moment. My father and I have a great father and son relationship – he is my friend, my brother and my father. I totally admire everything that he has done for me. I have a father who loves me and supports me in everything that I do unconditionally.

My father enjoys watching Syrian TV shows, visiting relatives and drinking coffee with neighbours. Having a father with Down’s Syndrome has impacted my relationships for the better. Many people look up to our family because of all that my father has achieved. As a child who grew up with a father with Down’s Syndrome, I know exactly how pure hearted and loving they are but also that they have ambition and drive and deserve a decent life and do not deserve to be aborted. What makes me most proud of my father is that although a lot of people thought that what he was trying to do was impossible, he did not pay attention to them and worked hard to earn money for his family so that I can go to school and learn.

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Many people think that a person with Down’s Syndrome are not able to live an ordinary life, that they are unable to get married or have kids – it may be rare (there are currently 3 documented cases of a male with Down’s Syndrome having a child though there may be many undocumented cases), but my father is an example that it is possible! I believe each and every person in this world deserves to be loved and appreciated, including people with Down’s Syndrome. I believe people with Down’s Syndrome and other disabilities deserve respect as they are able to achieve a lot more than many assume.

When Amber first messaged me, my heart instantly melted – I really struggle to find words to describe how I feel about Amber. She’s a vivacious little fire cracker with a heart of gold. She sees no different and is probably one of the biggest Down Syndrome advocates I’ve ever come across. Unlike the other stories I’ve shared, Amber has no direct relation to someone with Down Syndrome. At such a young age, she has chosen to dedicate her life to supporting those with Down Syndrome because, as she describes below, it’s changed he life. Plus she says most of her friends can do things that she’s still unable to do – Matt regularly helps her with her washing as she doesn’t know how to use a washing machine! Haha!

You’ll often see Amber going on a night out with some of her closest friends, who happen to have Down Syndrome who she is not a support worker for. She chooses to be friends with them as she genuinely gets along with them and has a fantastic time with them. She says her life would not be the same without them. She has a pure heart of gold and what I wish for is a world full of people with as pure a lens as she has.

Amber has dedicated her choice of studying to studying Down Syndrome and prenatal testing and isn’t shy to shout it off the roof tops just how proud she is of her friends.

She has held my hand through this journey – she is an absolute God send, any time I have any fears or worries, I know she’ll be able to answer them herself or through her friends or their families.

A big thank you to Amber for helping me to collate several of the stories I’ve been able to share.

Below Amber shares her journey.

What chose you to want to work with people with Down syndrome?

From around the age of five I knew that I wanted to have a job where I help and support individuals, I didn’t realise at that age that I would specialise in Down Syndrome I’d always thought it would be across-the-board.

Over the years I’ve had many jobs, including working at a law firm which I really enjoyed until I found that I could be doing more to help individuals rather than working 9-5 not achieving anything.

It sounds corny but I feel like the job I do now I was destined to do, I currently support individuals with learning disabilities whilst studying at university, as I hope soon to be a special needs teacher at a specialised primary school near me.

What have you learnt about working with people with Down syndrome?

This is a tricky question as there is not enough time in the world to possibly explain how much I’ve learnt. There are a lot of misconceptions surrounding adults with Down syndrome, like “Oh I bet the people you work with are dead loving” this is something that frustrates me as each individual has their own personality which cannot be dictated due to their learning disability. I have learnt that all of the adults I support and all of the adults that I count as my closest friends with Down syndrome all have their own amazing personalities they’re not given credit for the level of intelligence they have, sometimes when I’m upset Claire will call me and say some of the most inspiring words that just pick me up, which often makes me realise how much we take life for granted as most of these adults have some form of health condition yet you will never hear any of them moan about!

I sometimes get offended as I find that some of my closest friends have Down syndrome and many assume I support these individuals, so say if we go to the pub for a drink people look at me with a disappointed look, almost as if I were their terrible carer out on the razzle “you’re getting drunk on the job” which the girls actually notice people staring, but what’s funny is that the girls are all older than me by around 7 to 12 years and the misconception that they are very mentally young which is incorrect as I find that all individuals have tendencies to enjoy things from their childhood just like an adult with Down syndrome yet many a treat these adults like babies. One thing I can honestly say is that I have the best time with these individuals who society need to treat as individuals

How is what many perceive different to the reality for people with Down syndrome?

I find that many adults with Down syndrome get treated like babies which they themselves notice and tend to get upset by. Don’t get me wrong there are adults out there with Down syndrome that need extra support but isn’t that the same for adults that we class as ‘normal’ many parents that I know get cross with how their children are babied, as it can come across extremely patronising.

What would you like the world to know about people with Down syndrome?

The biggest thing that I’d like people to know is that adults with Down syndrome are capable of leading healthy, – what you would call ‘normal’ lifestyles if they have the correct support around them.

Over time I have met many different adults and I could be wrong but I have noticed many adults are a reflection of their family, so I know some individuals as the Down syndrome social scene is very tight knit that are not the best people what I would call a bit naughty sometimes then when you meet the families you see that the individual has either been spoilt and allowed to get away with bad behaviour or they have not had the support and encouragement to achieve what they want to therefore take part in negative behaviours in order to get attention. Whilst studying I found that many books are very scary to read as they make Down syndrome out to be tragedy “the end of the world” which that it is not I find that because most academic journals our extremely dated information is incorrect, as now in the 21st-century is a lot of promoting our adult independence, which I think is completely down to the individual and parent’s discretion whether the child needs an independent lifestyle.

I dedicate my words to Claire Ruth and Laura x

 

Amber x

I was tagged in Aditi’s Instagram page by Annie – a foodie blogger and was instantly captivated by her words. As you’ll see below, Aditi has a raw and candid way of writing – an unapologetic way of expressing herself with so much passion. It’s so refreshing to see an Asian talk so openly about Down Syndrome and the treatment in our society. Though on the whole the response hasn’t been bad, Aditi explores how they dealt and continue to deal with any toxicity – something I’m slowly learning to do through Saajan. He is my strength, he has given me that ability.

As I’ve mentioned in several posts, I feel that the Gurdwara and other places of worship could really play a pivotal role in assisting those with learning difficulties to learn basic life skills and also to give them a sense of responsibility – Kiran is an absolutely perfect example of this as Aditi explains.

Thank you Aditi for your open and honest words!

My name is Aditi and my little sister’s name is Kiran. She has Down Syndrome. Both of my parents were born and raised in Mumbai and my sister and I were both born and raised here in the US, about an hour and a half outside of Chicago, so we are first generation American. I was about 3 years old when my sister was born. My mother’s pregnancy did not feel any different with my sister than it did with me. The doctor offered my mom and parents the option to have an amniocentesis, which is the use of a hollow needle being inserted into the uterus to sample the amniotic fluid to screen for developmental abnormalities in the fetus. My parents opted out of having this done. My mom did not want to have this done and if for some reason there was something abnormal, she would be stressed out the rest of her pregnancy and felt it would effect the state of my sister in the womb. She knew either way she wanted her baby, no matter the circumstance.

After Kiran was born, the doctor suspected that she had Down Syndrome, but at that time (1991) they had to do a blood test which took a span of 2 months to be completed. My mom and dad also noticed the low muscle tone while holding her as well, and had suspected she might have Downs. Once the test came back, of course, they concluded that she did indeed have Down Syndrome. Thankfully she did not have any heart disorders or holes through her heart, which can sometimes be common amongst those with Downs. She did have a slightly imbalanced thyroid though, for which she has taken something to balance that her whole life. Other than that, super healthy.

As I mentioned above, my heritage is Indian. No one in our family, friends or community had anything negative to say to my parents regarding my sister, and I’m sure if they did, my parents would not go around someone with that type of mentality anyway. However my dad’s mother exclaimed when my sister was born, “A mad girl is born.” And used to call her ‘ghandi’ all the time. I am actually Kutch, but our family speaks in both the Kutchi and Gujarati languages. The word ‘ghandi’ in Gujarati means ‘no brain.’ So my grandma would call her that all the time. Anytime my little sister would try to hug her or go near her, she refused to hold her and as my sister got a few years older, my grandma would tell her she ‘was tired’ and wanted to go to sleep and to go away. There was an assumption on my grandma’s end that my sister was quite literally stupid and didn’t realize what she was doing.

Of course as we know, children and people with Downs are just as (if not more) smart and intuitive as us so my sister knew not to go near her. Our dad passed away when I was about 8 years old and when my sister was around 5, and after that my mom didn’t allow my dad’s mom in the house (go mom!) so my grandma moved (and stayed, thank god) back in India. We don’t speak to her for many reasons, her treatment of my mom and sister are just one of those reasons. Here’s the thing about toxicity: you need to cut it off immediately. Doesn’t matter who it is. And in my opinion and from the experiences I have been through in my life, blood is NOT thicker than water. If someone is being toxic and verbally or emotionally abusive, get them the hell out of your life. Not only was my dad’s mom verbally and emotionally abusive towards my sister, but she was towards my mother as well. The same goes for the whole ‘in-law’ thing. If you accept it as ‘normal’ or that people should just ‘deal with it,’ it will never change or get better.

Back to my sister: it gets talked about all the time that culture is a ‘reason’ for this type of negative behaviour towards someone with special needs. Well it might be a reason but it is certainly not an excuse. And this type of behaviour will only continue to persist if you ALLOW it to persist. If people and by extension, communities as a whole continue to allow this behaviour, that is basically saying that it is CONDONED. This must stop. The NOT tolerating of it has to start with the individual, as does any other type of change, because where else can we start but with ourselves?

So, after my sister was born, both of my parents said they would raise her just as they had started to raise me, so that’s exactly what they did. I used to ask my parents sometimes why my sister would get more attention than me, not because I was jealous but because I literally saw NO difference between myself and her: she was my sister and I loved her and that’s all I knew. My parents explained to me that she just needed a bit more help with things and took a bit longer to learn. At around 6 months old, a local centre for individuals with special needs (where my sister still goes today for classes and activities) came to start doing some therapy with her. They brought different toys which would help her, particularly gripping toys because as I mentioned above, people with Downs have lower muscle tone. Therapy continued for about 3 years, and then at around 3 1/2, to 4 years old Kiran started preschool. My parents noticed that she was incredibly observant, always looking around at her surroundings and analyzing things. She was quiet, curious, careful and meticulous in how she did things (and still is), playful, sassy, innocent, jovial and a very funny sense of humor that started to develop. At about 5 years old she started kindergarten and from then on, elementary, middle and high school.

In high school, there was an internship program for kids with special needs so she participated. She went to the local county city building and vacuumed as well as a local hospital and helped to fold towels. After she graduated high school, she started at YAS which stands for Young Adult Services and is basically a 4 year college program specifically for individual with special needs. Her last two years at that college included interning at Goodwill where she helped to organize and hang clothes. A few months after graduating from college, she started on a trial period at a local Laundromat, but it didn’t end up working out. My mom and some of her close friends started a Hindu Temple about 8 years ago, a few years before my sister graduated, so she started bringing my sister with her to the temple every evening and Kiran really enjoyed it. Since then, my sister goes with her every single evening! My mom gives my sister little jobs to do which she does like clockwork now: she makes sure the doors are unlocked for any visitors to come in, turns all bathroom lights on, makes sure all stalls have toilet paper and that the soap dispensers have soap. She makes sure people are always putting their shoes inside the closet before they go to pray and makes sure tables are clear and ready if anyone is having dinner there. People at my mom’s temple absolutely love her and look forward to seeing her smiling face and big hugs. Lots of people love to bring her gifts just because. I don’t know about you but I don’t have people surprising me with gifts all the time just because. Well, she is just THAT cool!

My sister has a great life, and for that I am so profoundly happy. She keeps busy every single day. She gets to take art classes three times a week at the same centre who has been working with her and our family since shortly after she was born. She participates in Special Olympics Baseball and Bowling. She is always meeting and making new friends. She loves to watch Pixar movies. She loves early 2000s TV shows (The OC and One Tree Hill in particular). She gives the best hugs. She expresses herself. She laughs. And if there’s one thing she doesn’t need, it’s anyone elses pity. She has just as much of an amazing life as anyone else. And that’s all we can ask for at the end of the day, isn’t it?

I can’t even put into words how profoundly grateful I am to have her as my sister. I wish every single human could have the experience of someone close to them having special needs. I don’t like the word ‘normal.’ Never have and never will. Who decides what is normal? Who’s to say WE are not the ‘abnormal’ ones and they aren’t ‘normal?’ I also never liked the term of someone having ‘disabilities.’ Just because someone doesn’t have the same abilities as someone else doesn’t make them less than. These terms imply separation, not inclusion. One thing I know for certain is I would NOT be the same person I am today without having her as my sister. Her name is Kiran, which means ‘ray of light’ in Sanskrit. My parents definitely named her appropriately because that’s exactly what she is: our ray of light, sunshine, constant smiles and positivity. She has taught me how to be more patient, forgiving, kind, understanding, loving, innocent and playful. Any time a situation happens that is about to test my patience, I think, “How would my sister respond?” She is so content. Always laughing to herself, listening to music, dancing without a care in the world on where she is or who is watching. She openly expresses herself without the feeling of fear or judgment from others that most of us can’t seem to shake. She is super soft spoken (unlike me – I’m the loud sister), partially because that’s her personality and partially because people who have Downs tend to have different vocal cords than us, so they often times can’t speak as loudly. She’s funny, playful, and super sassy (guess where she got that from? lol). She’s my sidekick and teacher for life. What I did to deserve such a pure soul as my sister is beyond me. I am so grateful for the lessons and laughs every single day with her.

Thank you again for including me!

Aditi

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I know in our journey, the boy’s aunties and uncles (Masis, Masar Ji, Pua Ji, Fufar Ji, Chacha Ji) have played a pivotal role in both Saajan’s journey but also ours. Through their love and acceptance, ours has also grown. They’re there to remind us of how worthy Saajan is. I’m not going to sugarcoat the fact that in the early days, I had moments of rejection. If it wasn’t for our family, I don’t know what we have done. The grandparents are our hugest pillar of support – their unwavering faith, wisdom and attitude has helped us plough through and we have come out so much stronger. We are truly blessed to have the greatest family support network.

Claire was born with Down Syndrome 31 years ago – a time where things were considerably backwards and children with Down Syndrome were viewed as a burden and as though they should be institutionalised.

Below, Claire’s auntie, Diane, who also plays a very large part in Claire’s life shares her experience of being an aunt to a niece with Down Syndrome and the response they received.

When Claire was first born, I didn’t know much prior – my friend had a baby who passed 12 months earlier at 6 months. My friend was sent home from hospital, hadn’t done any checks on the baby, the baby was born with extreme floppiness and his tongue was always out, by this time he had hole in his heart which was undiagnosed and he sadly passed. So when Claire was born I was petrified that that would happen to her.

They always said that you could tell the severity by the features which we could not really tell with Claire.

Claire failed to thrive in the early days as her mother, Sue, was in pure shock and she never took a bottle. Sue struggled to even push the pram due to shock.

Therapists said to leave toys around Claire at 6 months so she could reach for them so she could learn if she wanted something so she would go for it. Sue were very firm with us all treating Claire normal.

My dad was good with her, my parents worshipped Claire – my dad on his deathbed said “I’m proud of that one (Claire) they said she wouldn’t walk or talk”.

Back then, people did stare at Claire – I remember one time when Sue was in the park with Claire and one mother pulled their child away and Sue said “it’s not contagious”.

The good thing is that Claire changed us all – none of us knew what would come from Claire she has amazed us all, children never seem to care.

I’m most proud of how Claire has grown into a smart young woman which we never thought she would, She helps everybody and would give her last penny to anybody.

 

 

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.