Baby Brain Memoirs

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

X

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.

What a family – there are literally no words to describe the love and warmth that oozes from this family. The loving and giving nature that sees through a pure lens, they see no different. A story of an expected diagnosis which opened up a whole new world and led them down a blissful path of adoption – a path that never would have existed had they not given birth to Bree. I wish more people like the Coxes existed.

Below, Kecia shares their journey.

We are the Cox family. Kecia and Kris, our children Kyra (15) Adrie (12) Bree (10) Mia (10) Claire (5) Livvy (5) and Noah (2). Our story started out as many do, we met in college, got married, graduated from college and started a family. It was when our 3rd daughter was born that our story took a different turn then what we had envisioned.

I was 27, young and healthy, I was not “at risk” for having a baby with down syndrome so this wasn’t supposed to be “my” story, it was supposed to be “someone else’s story”.

When Bree was born via c section I only got to see her cute round face briefly before they whisked her away. My baby was taken to the nursery for oxygen and I was taken to recovery only to watch as doctors and nurses whispered in the hallway…..the news was finally delivered…..”We think your baby has Down Syndrome”.

My first reaction came with intense fear and I prayed they were wrong. At first I only thought of the future and how my world as I knew it was crashing down around me. I spent the first 24 hours of Bree’s life in tears, without her in my arms…and the moment I was finally allowed to see her in the nursery was the moment that changed me forever. The moment that started a chapter of my story I may never have written, but that I ABSOLUTELY needed to be in MY story.

As she wrapped her tiny fingers around mine, I knew it was all going to be ok. This new world we had just stepped into was going to be ok. As I held her tiny hand I knew that she held hands with God and that walking by her side in this life was a blessing, not a burden.

I knew from the very beginning that Bree was going to change my life, but what I didn’t know was just how many other lives she would also change.

We had no idea when we started our path with this little miracle that because of her and her extra chromosome, because of her influence in our lives, because of the way she loved, and in turn taught us to love, we would travel around the world to a foreign country to rescue a little 4.5 year old girl (Mia) from an orphanage and the fate of dying in an institution, and then 5 years after that, after miraculously having twin girls, we would travel across the world again to scoop up a tiny baby boy (Noah), who also was destined for the same fate, and bring him home to our family. Three of our seven children carry that same extra chromosome but just like each of our children, special needs or not, they are each their own miracle, leaving their own mark on the world as they teach us all what matters most….love.

Through the course of our family’s story we have witnessed love making miracles.

We have witnessed tears of fear and sadness for the life we thought we were losing because of special needs, transform into tears of joy and gratitude for the unexpected miracles of this journey.

Down syndrome changed us in ways we will forever be grateful for. We may spend all our days teaching and caring for Bree, Mia, and Noah, but when all is said and done, the things we give them won’t hold a candle to what they will have given us.

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.

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.

Sue gave birth to Claire in a totally different generation to now. 31 years ago, children with Down Syndrome were sent to mental institutions and were shunned by society. Thankfully, this is now mostly an outdated view of Down Syndrome and it is a lot more accepted.

I’m so grateful that Saajan was born in this day and age as I can’t imagine coping with the dark thoughts and feeling that I did when we received the diagnosis – similar to those that Sue describes below, along with dealing with such a negative response – it’s enough to tip anyone over the edge.

Sue has does amazingly raising Claire to be a strong woman despite raising her during a time where there was so much stigma attached to having a child with Down Syndrome – Claire is so proud of who she is and that I really do believe is a credit to her upbringing.

Years on, although things are very different today, and the support and early intervention available is amazing, the raw emotions you often feel when you are given a diagnosis are still very much the same.

Sue shares her story below …

I’d had a c section, and they’d taken Claire and put her in a room – they explained it was too cold in the room I was in. I had no idea what was gong to unfold.

I’d had a brilliant pregnancy but just before she was born, I had reduced movement and it appeared she wasn’t feeding off the placenta well. On new years eve, I was scanned for a heartbeat, I had a caesarean two days later and I suspect they knew something wasn’t right.

I’d asked to see the baby (the nurse hadn’t realised that they weren’t supposed to allow me to just yet) – as soon as I saw Claire, I knew something was wrong as previous to this I had known about Down syndrome as my sister’s friend had had a baby with Down syndrome – her baby had had a deep impact on me as the baby passed at 5-6 months from complications.

As Claire’s dad was about to leave the hospital, I heard a nurse say “Mr Dutton, the doctor wants a word with you”, I was wracked with fear, what could be going on? My baby was 8 pound 8, I’d had a brilliant pregnancy. After Mr Dutton came back in they wanted to talk to both of us. Everybody was pushed out of the visiting area. Dr Hill, a very old doctor, then drew the curtains around us and I said “she’s disabled isn’t she” I went hysterical it was ridiculous when I look back I said “I can’t do this”. The doctor said to me these are very loving children and I said but my son is loving?

I took Claire’s diagnosis really bad.

My dad was my rock – he was absolutely fine about the diagnosis. He was always there for any of us but he was brilliant from when he first came to see Claire.

My mum on the other hand kept putting her make up on to mask her feelings – she could not take it. “Mongrel” kept popping up in her head – this is how children with Down syndrome were viewed in those days. My mum couldn’t see anything wrong with Claire which was denial.

I was also told that Claire’s heart was enlarged and that she could have heart failure at any point. I went into self-preservation when I found out her heart was enlarged they told me she might not ever walk or talk. I was in hospital for 10 day’s which in those days was odd as you were in and out.

The hospital that Claire was born at was next to Marston Green hospital which was known as ‘the nut house’ where anybody that had a disability was sent. Anyone with mental health issues were put in there. That stuck in my mind – I did not want my baby to be there.

We were my dad’s girls – we were his life – my sisters and my mum. I wanted the same for Claire -I would not allow her to be mollycoddled, I wouldn’t let her be babied, everything was black and white. I had to learn myself I couldn’t allow myself to have a grey area it took me to two and half years until I realised I couldn’t be without her.

Before her second birthday she had heart surgery where I knew it was life or death, heart surgery on the Thursday she was coming home on the Tuesday. Back then, this was pioneering surgery, she started getting abscess after the surgery – it was her body rejecting the foreign object. Very quickly I took her into hospital where they cleaned it all out and sent her out.

She still was not right after but the doctor refused to come out on the Sunday night – I could tell something was wrong she had a temp of 103. I stripped her down gave her calpol and the doctor said she had a chest infection. I took both my kids on the bus and travelled miles to pick up to the prescription. I was then told to take her to hospital. Once at the hospital the doctor looked at Claire then he went away.

They eventually found that she was allergic to the dressing that they had covered her wounds in. The next thing I knew, she had an infection which could get in to her blood.

I explained I needed to call my dad to take my son. By the time I got back from making a call to my dad they whisked Claire away there was a group of doctors waiting for her. I was crying my heart out, I thought she was going to die. She bounced back quickly. If she hadn’t of had her heart surgery she would have died before her third birthday.

Life is harder as her dad passed last year so I have no respite as Claire now has a lot of anxiety as a result of her dad’s death. She has become fearful of leaving me.

I am so proud of Claire and the wonderful caring lady she has become. She is so supportive of those with learning disabilities, she is willing to help anyone. Now considering this is the baby that I was told would not talk or walk, I’m so proud. I also love the relationship that Claire shares with her brother Michael – it is so strong! There is no disability between them they treat each other like brother and sister they play each other up terribly.

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.

Aarti and her husband received Niam’s diagnosis while pregnant – I’m always fascinated by these stories as I think I sometimes feel short changed that we were not given the option or information to make an informed decision. Deep down though, I’m relieved we weren’t given the decision to make – Saajan was meant to be in our lives, and I’m so happy now for it – back then, I had no idea what I know now.

I find it heart warming reading stories about those that found out they were pregnant with a baby with Down Syndrome and wished to carry on – sometimes I wonder how my pregnancy and initial days with Saajan may have been different had I known before.

Below, Aarti shares her words to all new mothers who have been blessed with a child with Down Syndrome.

I am writing this letter to share my story, to give you much needed hope and strength. My story starts in 2012, when I had a phone call at work about some test results. I was told that I had a 1:50 chance of having a baby with Down Syndrome. I was a ‘high risk’ pregnancy. I was called into the hospital for further advice and the doctors spoke to me about whether I wanted to find out for certain. They offered me the choice of having an amniocentesis procedure and after a very difficult decision, I opted to have this done. I wanted to know more about my baby so I could be fully prepared.
As I sat in a car park with my husband, I remember receiving the news on the phone. “Your baby has Trisomy 21.” Now, I wouldn’t have known what that was but I had researched a little about it beforehand so I knew what she meant. Why couldn’t she just say Down Syndrome? I hung up the phone and broke the news to my husband who stared in disbelief. We both were shocked. I hugged my husband and we both cried. Cried for the loss of a child that we thought we were going to have. For the next few days and weeks I continued to feel sad and question why this had to happen to me. What did I ever do to deserve this? Why did God make this happen? My husband and I decided not to share this news with anyone except only very close family. I did not want to explain to everyone how I was feeling or what Down Syndrome was. I was not ready to deal with this myself let alone try and speak to others about it. It was a tough time in my life but I got through it.

I started researching more about Down Syndrome. I ordered books and looked at websites to educate myself and I started to feel better. This has happened for a reason and I was going to make sure I was ready to be the best mother I could be. The next few months were a combination of more appointments, tests, MRI scans and ultrasound scans. As well as my baby being diagnosed with Down Syndrome, the doctors had now said that there was something wrong with his brain. I was told many times by a ‘specialist’ doctor that my baby would be ‘severely retarded.’ To hear those words by a doctor made me feel so angry. He spoke about our baby in such a negative way and made us feel like we were crazy to go ahead with the pregnancy. I was offered a chance to abort the baby but as it was so far ahead in my pregnancy, I would have to induce labour and deliver the body! I thought this was disgusting. How could this even be an option? I felt so emotional hearing this. My husband told the doctor that we had decided to continue.
I knew he also wanted to punch him in the face.

When you’re trying to come to terms with the news that your baby will have a disability and then you are faced with the negativity about what life will be like with your baby it’s difficult. No one will ever know what life is like raising a child with Down Syndrome or how it feels unless it happens to them.

Our beautiful son was born at 32 weeks by a planned c-section. As soon as I saw him, it was love at first sight. It felt so surreal. There he was, my little baby boy and he was absolutely perfect! He weighed only 3 pounds and was placed in what looked like a sandwich bag to keep him warm. He was soon transferred in an incubator and taken to the neonatal ward, where he stayed for five weeks. It was a few days later when I actually got to hold him. The nurse explained to me about Kangaroo Care, which was skin to skin contact to help control his temperature and develop our mother baby bond. She helped me place him carefully in my vest and what a wonderful experience it was! I instantly felt amazing and as I looked down at his beautiful little face, I whispered, “I love you.” He responded by moving his head up and it felt like he made a sigh, as to say finally my mummy is here. It was a very emotional experience.

Time has flown by so quickly and I cannot believe that he is going to 5 years old in May! He has been through a lot since he has been born. There are always ongoing appointments with paediatricians, audiologists, ophthalmologists, physiotherapists, speech and language therapists, cardiologists, the list goes on. We have been lucky to have such a tremendous amount of support available to us. In June last year, he had open heart surgery. The worst nightmare for any parent but we couldn’t believe how quickly he recovered. He is such a strong and brave little boy.

At the Royal Brompton Hospital-smiling a few days after his heart operation

He is like any other four year old. He loves chocolate cake and eating almost anything! He loves watching Mr Tumble, dancing to music and likes being cheeky! He has accomplished many things that normal children do but it has just taken him a little longer to get there. He has started school and made friends. He starred as Joseph in his first Christmas nativity play and last month he started taking his first steps!! We are all so proud of him. He has bought so much happiness into our lives. He has a wonderful sense of humour, is lovable, affectionate, sociable and he loves making others laugh. His smile is truly infectious. He is perfect and I wouldn’t change him for the world. It’s not easy off course but when is it ever easy to raise a child?

So to all of you mothers out there, going through similar things, don’t be disheartened or scared or worried. Be happy and be strong and have lots of fun! You are already doing a great job. There is a supportive community of parents out there to help and guide you every step of the way. Every child is a gift from up above. That’s the meaning behind my son’s name, Niam.

Love from a proud mother xxx

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.