Category: Down’s Syndrome Awareness

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.

One of my greatest fears when Saajan was born was how it would impact Arjun. Would he resent us one day? I remember grieving for his loss as well as my own. It hurt the most – the thought that all we wanted to give him was the gift of a sibling, but instead we birthed a burden. At least that’s how I felt then. It’s still a deep rooted fear of mine that one day he’ll resent his brother and us, but stories like Julia’s fill me with so much hope. Julia has comforted me at my moments of weakness with instilling me with confidence that Arjun will grow to be a well rounded individual who’ll love his brother so fierce just like she loves her twin brother Michael! You can feel how much she cares and adores her brother.

 

 

Julia writes at Beyond The Waves blog and also shares her journey on Instagram.

Here’s Julia’s side from a sibling perspective on how having a sibling with Down Syndrome has impacted her life …

Looking back on my life with Michael, I’m more than grateful for having had him as a twin brother. Oftentimes I am asked if I ever feel like Michael is a burden, or if I’ve made any sacrifices for him. I can comfortably say that I absolutely love and adore Michael, and couldn’t imagine my life without him.

Many of us make “sacrifices” for our loved ones, but we would do anything for the people we love. In those cases, they don’t feel like sacrifices, but simply acts of kindness that we are instantly rewarded with. And when I say reward, I mean in a sense of gratification and fulfillment. For me, there’s nothing like taking Michael on an adventure and getting to witness his amusement. I’m so grateful every day for being blessed with his presence.

With the constant talk of eliminating Down Syndrome and misconceptions of it appearing as a burden to society, there needs to be increased awareness regarding not only Down Syndrome, but the special needs community as well. Experiencing life with a loved one who has Down Syndrome exposes the most genuine and pure perspectives in life.

I’m a firm believer that your thoughts shape your reality, and am forever grateful for Michael’s presence. One of my favorite qualities about Michael is his genuine kindness towards others. He holds no bias towards others, and treats all others the way they treat him. Michael doesn’t care about how you look, how you dress, what your race, sexual orientation, or gender is. As long as you treat him well and approach him in a kind manner, Michael will reciprocate that as well. Even though he may communicate without words, he really excels in the most important form of communication: the language of love.

While many parents tell me they’re concerned with how their children’s lives will be impacted by having a sibling with Down Syndrome, I am always confident with my answer. Those children will forever cherish having their sibling with Down Syndrome. Growing up with that sibling will immediately establish a positive connection with the special needs community, and teach them more than anyone else can.

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.

Another one of my biggest fears is how Saajan will be accepted in the wider Asian community – will he be able to go to the Gurdwara as openly and freely without glances and stares? Would he even grasp the concept of our religion? Will I be able to keep his hair like Arjun? Speaking to Sarbjit and seeing Gian develop through Instagram as he’s further on his journey, gives me a lot of hope for our future!

My wish is to educate the Asian community especially on what Down Syndrome and other additional needs actually are – there’s quite a black and white perception of special needs within the Asian community due to a lack of knowledge. I pray we are able to move forward as a community and we are able to educate each other through sharing knowledge and information and by being more open.

 

Below, Sarbjit shares her story of an unexpected diagnosis, the stigma attached to learning difficulties within our community and how the diagnosis was received.

7 years ago, our family began a new journey. It has been an emotional, joyous, demanding and rewarding one so far. My husband and I had already been blessed with two children who were 10 & 12 years older than their baby brother Gian.

Gian’s birth added a new dimension to our lives. We had to learn about the world of parenting a child with Down Syndrome.

Prior to Gian’s birth I had no complications, scan’s were normal and I didn’t take any screening tests for our baby. Our belief is that a child is a gift and we would not have wanted any tests even though I was over 35.

Gian’s dad held him just after his birth and kept saying to the midwife “his back seems weak, he feels really fragile”.

I kept replying “it’s because his tiny and only weighs 4lb and we were expecting a big baby”. He will get stronger after he starts feeding”.

No one in the room had said that Gian may have low muscle tone or may have a genetic disorder. We were both very happy and may be they didn’t want to say anything until the Dr saw me in the morning. I would have liked a little more reassurance from the midwife that we will check this out for you in a while. The Drs/consultants went all quiet and the joyous moment for us dampened slightly by their moods. Not knowing why…

I had the feeling when I finally got a moment alone that Gian may have Down Syndrome.

I asked the sisters on the transitional ward if they knew that my baby might have Down Syndrome and they said yes we had an idea as soon as Gian came over to the ward. They gave me the right response. The staff were exceptionally helpful and supportive.

The Dr’s came to see me in the morning and they didn’t hand me anything to read (which was great) just spoke to me about the characteristics that may suggest that Gian has DS. They decided to send Gian’s blood tests to confirm whether Gian had Down Syndrome. The results arrived 4 days later.

In that time Gian had very low blood platelet levels and jaundice too. We were not allowed to leave the hospital until his platelet levels increased. He didn’t have any other health issues at the time. Gian had to keep having blood taken from the heel and I was then told the sample provided wasn’t sufficient and we need yet another sample. It was a little distressing and sometimes the Dr’s (junior) didn’t seem confident and would also make a mess.

Gian wasn’t feeding well and I had to express and we fed Gian through a little plastic open beaker. It was fantastic to see him sipping away but his sucking was weak and the milk would dribble out from the sides of his mouth.

However, the hospital electrical pumps were a life saver and tempted for me to invest in one too. There was no advice given at the time from staff on different bottles or nipples that might help Gian’s feeding at home.

On Day 5. We were taken into the Sisters office with two Dr’s that had been seeing Gian over the last 4 days. It was confirmed that Gian had DS. The staff looked a little sad as my husband was very upset. But I was so positive and ready for the beautiful journey I was about to take. We were given a letter from Sister to open at home. It was the poem about going to Italy and ending up in Holland. We met the paediatrician on Day 6 and she was very informative and told us how things will be over the next few months. But she said Gian is your son first. Go home and enjoy your baby.

My experience in hospital was very positive.

How we both told our close family and friends:

We sent one text message. Same time. The same message.

Yes we got some sorry’s and questions to whether we took any test before ours son was born.

I am fortunate that I was able to tell my in-laws, parents, brothers and sisters in a clear and calm way and communicate how I was feeling and how I would like them all to be involved in Gains’ journey too. I wanted them all to see and feel my passion for Gian to grow and develop in his own unique stages in life.

When I came home on day 7 is when it had hit me that my little baby boy I have bought home has a DS. I looked in to the mirror as I placed him into his cot and said “Why me?”. I didn’t cry but I did everything I could to support my little boy and get all the things that he would need to help with his feeding. Gian had no complex issues with his health.

Within the Asian community there are families with children that have learning disabilities and they have not supported each other. There are negative attitude towards children with a learning disability. There is a lack of awareness and understanding with regards to learning disabilities within the Asian community and it is the child that may fall behind because of the lack of early intensive interaction and intervention.

Within the Sikh community we have had to deal with misconceptions and negative attitudes in relation to Gains’ disability. However this has not deterred us from seeing the potential in our child and also tackle and dispel some of the attitudes in the community.

Gian is very welcomed at the Gurdwara and is missed by the Sikh community if he does not turn up on Sunday. He has integrated well and learned the routine and enjoys attending his place of worship.

Gians hopes for his future that he is content, health and to be reach his full potential and to be accepted in the wider society for who is and not what society wants him to be.

Gian is the best thing that has happened for our family.

Love Sarbjit & Gian xx

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.

Joseph is one of those little boys who you can’t help but fall in love with – aside from his handsome good looks – he’s going to be a right heartbreaker!, there’s a special little twinkle in his eyes, they’re always smiling!

Joseph comes from a large family and is surrounded by so much love and support. Like us, Jen and her family are strong believers in God – you can truly see how their faith has got them through seeing the beauty in absolutely everything! Anytime I feel sad or down, I head right over to Jen’s instagram page to remind myself that life IS beautiful!

 

I always dreamt of a perfect family – Jen’s flawless family pictures is a reminder that we STILL have a perfect family!

 

Here’s a little from Jen …

First, having a child with Down Syndrome has been the best thing that has happened to me! Not sure how we got so lucky, but everyday is a blessing. There’s so much that he is opening my eyes to in life & love. Like a present I get to unwrap everyday & rediscover! One of my favorite things I have noticed about Down Syndrome and in Joseph is his ability to never stay down. Down Syndrome just doesn’t seem like the right word. Yes, he gets mad sometimes, sad, disappointed & hurt. He feels all those things. But he doesn’t let it linger. He picks back up in a way I’ve never seen any of my other babies/toddlers do…there’s always a big quick smile around the corner. Pretty sure it’s just who he is to his core. A happy soul…we just love basking in his sunlight. Joseph has taught me to better see pass the handicaps of others…without even realizing what I was doing I was missing that before & missing the soul! Joseph is so much more than someone with Down Syndrome & to me he’s just Joseph! I forget he even is any different most of the time.

What is it like to have a baby with Down Syndrome? It’s like having a baby! {but better!} Though I am aware of his struggles what I see are his strengths. His joy for life, his happy personality, love, excitement to play with his siblings, the twinkle in his eye & wonder in all the new things! It’s hard to imagine this world without the new level of fulfillment he’s brought ours. He’s elevated my life, and our family to a higher level of living, fulfillment, & happy! Not sure how we ever got so lucky!

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.

I very clearly remember the first time Jai messaged me via Instagram, she offered me words of comfort during my lower days of motherhood … What I didn’t know at the time was what a dark journey she’d been through herself.

When I came to know it as time went on and we spoke more, my heart grew a very special place for Jai and her babies because it’s so rare to find people who are so giving and so pure even through their own grief. I know I struggled to be there for anyone while I came to terms with Saajan’s diagnosis

When I first gave birth to Saajan, Jai was one of those people who offered me words of comfort that actually made a difference. She made me realise how lucky I was to have Saajan – every time I have a low moment, i think of Jai and her courage, I think of Jazmine as our little guardian angel too and I am automatically uplifted. Jai did a skydive to raise money for the Down Syndrome Awareness on Jazmine and Jian-Jazmine’s birthday so she could be closer to Jazmine in heaven.

This is one of the most difficult reads that I’ll be sharing, and I’m so honoured that Jai decided to share her story here to raise awareness for Down Syndrome but also of the pain of child loss. I have the utmost respect for Jai for being the incredible woman that she is …

Down Syndrome and pregnancy loss both overlap for me.

Our journey started Jan 2016. I became pregnant with twin girls. It was exciting but also scary knowing the risks that carrying twins can have.

After 2 previous losses, my anxiety was pretty much sky high and I was given scans every two weeks till I hit 12 weeks. We were asked if we would like the NT scan at the 12-week check-up. I had the NT with my Son back in 2014 so thought why not?

When I think back at my NT scan in 2014, all I remember is that the NT scan was to make sure the baby was ‘OK’. I didn’t actually know what that really meant. I actually had no clue that the NT was to help assess whether or not babies are likely to have Down’s Syndrome. I guess my head was clouded with all the happiness of being pregnant again and that I’d made it to 12 weeks.

I guess when you finally get to the 12-week stage there is a relief and it seems like a safe zone, but for us, it definitely was not.

Twin 1 showed an increased amount of fluid at the back of the neck. During the scan, I thought nothing of it until I was told to take a seat in the consultation room.

I then was told Twin 1 may have an increased chance of Down’s Syndrome. The consultant was very certain this was the case. I actually didn’t know what to think at the time I was clueless about it all. I was later told more news that Twin 1 may not make it to 16 weeks because of the results.

I went home overthinking the worst. “No I can’t lose another baby, it just can’t happen”. The next month felt like forever till my scan, not one time did I even think about Down’s Syndrome, I was just praying that my baby would fight and make it regardless of what the consultant had said.

As we hit the 16-week scan it was all perfect and I felt a huge relief. It was all going to be ok; this was the hurdle we had to get over. Not sure what I expected but I thought that meant everything was fine and it would be plain sailing.

With possible markers that showed at 18 weeks, we were heading on a journey which was going to be so different. Was our baby going to have Down’s Syndrome? or was there something else? I wasn’t clued up one bit; I had no idea the depths of what Down’s Syndrome really was. I wasn’t sure how life was going to be, should I give up work? do I start looking for schools?, How will Jaykar understand? How will anyone understand? There was so much uncertainty, confusion and my thoughts were a non-stop train journey.

My main heartache at the time was what if nobody loved her? I wanted the love to be equal between the twins, but what if people looked at her differently and loved her less?

We decided to keep this news to ourselves. I felt any unnecessary stress was just not needed for me and the babies. What I mean by that is that I had no faith in positive conversations if I was to speak of Down’s Syndrome; I knew that certain people would possibly look at me differently and I wasn’t ready for hearing the wrong words.

With some amazing counselling, I was feeling more and more positive about my pregnancy as the weeks went by and most importantly that I was going to cope absolutely fine.

Our 20-week scan was a lot more thorough as Twin 1 required an echo scan and all organs checked. With all the prayers everything was perfect and we were so so happy. The consultant advised although everything seems perfect further tests would be completed once the baby was born.

As we approached 22 weeks, 24 weeks and 26 weeks the babies were looking more and more perfect and I was so excited. We were hitting the third trimester; we were absolutely prepped for their arrival. I’d just gone 28 weeks and was looking forward to seeing the girls on their next scan.

This was the most heart-breaking day of my life. At my 28 week scan, there was no heartbeat for Twin 1, she had passed away. I can’t even put into words how much it killed me inside hearing those words. I didn’t care about anything, I just wanted her back.

After seeing the consultant, he suggested she had passed away because she has downs syndrome. I didn’t understand, all the scans showed she was fine, she was the stronger one, weighed more than twin 2, her echo scans were fine, and she kicked, wriggled, hiccupped and rolled more than her sister. I just didn’t understand anything anymore and I still don’t.

I was then told I had to carry both girls until 40 weeks.

Unfortunately, my body just didn’t cope well. I went into labour at 33 weeks. I had an emergency c section. Jazmine born silent and Jian-Jazmine born screaming 25/08/2016. I cannot even begin to explain how I was torn between my feelings for both my daughters.

A post-mortem was carried out and I saw the words straight away as the first page opened in the consultant’s folder ‘Trisomy 21’. I didn’t wish to speak any more of it. I was just so upset and didn’t understand why she didn’t survive. I couldn’t bear to ask if it was her heart, lungs, muscles, what was it? Till this day I still don’t know, I haven’t had the courage to ask or read the post-mortem in detail.

I shut off for a few months. We began to think whether we should speak of Downs Syndrome and tell our families. So far we had just said there was a chromosome problem, we just didn’t wish to be specific, and I guess we were scared of the reaction and any questions that would come with it.

It eventually built up inside of me so much, I needed to speak of Jazmine, I needed to speak of Downs Syndrome. We then decided after Christmas we would tell our families and I felt I had to do something in Jazmine’s name and to create some awareness. I wanted people to know it was ok and if Jazmine was here there were some amazing support groups and organisations that would help us in so many ways.

I follow so many amazing advocates/families who share their lives through social media. These families speak so positively about Down’s Syndrome and I can’t even tell you how supportive that is. I see how these amazing families become stronger and enjoy all the love their child gives and I will truly miss that with Jazmine for the rest of my life. I absolutely believe she would have changed me as a mother, I would have overcome so many insecurities, anxiety and become so much stronger inside and out.

Jazmine has drawn my heart so close to so many charities and I have amazing ideas to celebrate her name in the future and raise money for all the brilliant charities that help support families.

I am proud to say my daughter has an extra chromosome and if she was here she would definitely be the heart of our family. Down’s Syndrome is not scary and nothing is impossible and this can truly be seen through these amazing families sharing their beautiful children through social media.

 

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.

Matthew’s dad, Peter, has shared his thought and feelings about their journey with Matthew who was born 30 years ago. It’s bitter sweet reading accounts from parents from a totally different generation – it’s amazing to see how they coped and how well their children have done, but it also breaks my heart at how children with Down Syndrome were viewed back then.

Matt is doing so incredibly well – he lives independently and has a girlfriend, Claire.

Sadly Matthew’s biggest supporter his mother Lesley passed away last year from a long battle with Multiple Sclerosis, she tirelessly fought for her son to have the same as everybody else working closely alongside Claire’s mom Sue to help other new parents, they went out in all weathers to spread awareness.

Matthew’s mum loved him so dearly that Peter has really wanted to continue spreading awareness.

Here’s Peter’s account …

What were your biggest fears when your baby was born?

The surprise, shock and the unknown. How would we cope, what would the future hold and how would Matt develop. How would others react to our “different” baby? The open heart surgery at 18 months was a horrible time for all of us, seeing him in ICU afterwards and not knowing how it would turn out was very difficult. All the staff were wonderful and did their very best for us.

Did you receive early intervention back then?

Some but very little. We were told a few hours after birth that they thought something was wrong and Lesley said she knew straight away.

What were you told by professionals about what your life would be like?

Very little. We kind of made it up as we went along. They told us it would be tough and challenging on occasions and that we would have many battles ahead.

What is your life actually like?

Different but wonderful at the same time. We expected to be going to Holland but arrived in France instead. But after the disappointment of going to the wrong place we realised that France was just as good. We never had any regrets and as a family just got on and coped with things.

What were some of the misconceptions?

Far too horrible to write but one I remember is that we had a “mongrel baby” and ought to give him up for adoption. It was something we never considered doing.

What are some of the challenges you’ve faced?

Plenty. Getting what we believed was the right educational provision right from nursery to 6th form was a never ending series of fights and arguments. Nobody wanted to do what we believed was right. Even now social services seem to be a never ending battle to get anything for Matt. Getting firms and people to accept I am his father and need to speak for him is far from simple.

What are you most proud of?

Matt and how he has turned out. He is a wonderful young man everything being considered and allowing for faults and medical issues. We all, the family, battled along and have come out the other side happy and smiling. We did the very best we could.

What would you like to share with parents with a new baby with Down syndrome about the future?

Keep going and never give up as it will be well worth it in the end. A Down syndrome child is very loving and affectionate and will reward you for all your hard work and effort. Fight for what you believe is right for you and your child and don’t be afraid to ask for help.

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.

Jasmine is a sibling to a younger brother, Aaron, who happens to have Down Syndrome. It’s always an eye opener for me to read experiences from siblings given a big fear of mine is how Arjun will cope with Saajan’s diagnosis. Below, Jasmine shares her experience of having a younger brother with Down Syndrome – it’s so comforting to me to see that naturally the journey will have it’s ups and downs but ultimately a siblings bond is forever strong – regardless of an extra chromosome! Jasmine shares how Aaron has enriched her life and also provides an insight in to how it was to have a brother with Down Syndrome within the Asian community 25 years ago.

My baby brother is not so much a baby anymore he is 25 and a very special person! Living with Down syndrome is not always easy Aaron and our family have been the topic of many peoples conversation, we have had peoples staring & pointing especially within the Indian community. For my elders this was a lot harder to deal with being 25 years ago and many people where scared anything different or the unknown. They saw Aaron as a burden rather than a blessing and would keep telling us that things would get better even though they has no idea about Down Syndrome. But we took this as an opportunity to educate and break down some barriers in our community.

Aaron has always been different but as a family we never cared about his differences we weren’t always sure what was best for him and his development but took the view that to treat him the same. Encourage him, love him, teach him and tell him when he was wrong (not that he ever wanted to hear this). As the years have gone by and the world has become more accepting of the downs community it has become easier as there are more doors that are open for him and more support for us.

Unlike many other families in a similar situation to us, we always had someone to take care of Aaron, be at home with him take him and pick him from school. We had constant family support and it was actually quite a challenge to give Aaron his space and independence because we had become so use to him needing us. So when he was ready to go to Asda himself and get the bus to go into town it was quite a shock. What I learnt was that we didn’t give him enough credit for how much he has learnt from watching us and how smart he was in putting it altogether.

Just like every member of our family Aaron has a big personality of his own; he is very cheeky, competitive he is super sensitive and loving he is a force to be reckoned with. And just like everyone else Aaron has hobbies he is a die hard Liverpool supporter with his own season ticket, he plays football once a week and much to my families surprise & delight he loves to bake and he is very good at it and is now the official family baker for all special occasions The love that Aaron has is unlike any other that I have known, he doesn’t understand how to put conditions on love which is so beautiful.

Aaron has been through more in his life than most people I know and he is one of the happiest people, he wakes up every morning with a big smile on his face. When Aaron was born it took the doctors a little while to tell us that he had down syndrome (it wasn’t very well recognised back then) and we didn’t have a clue what it meant to have downs syndrome . He was also born with 3 holes in his heart so for the first 18 months of his life he was in and out of the hospital (mostly in). Then when he was 11 he got lymphoma which he fought and now has been cancer free for 11 years! But through it all he smiled and picked us up when we are low and gave us the strength to carry on…

I could list of all the things that I love and admire about my baby brother but if I had to name just one of my favourite things it would be that he doesn’t care what other people think of him he does what makes him happy. At every single party he truly is the life and soul of every party, he is the first one on the dance floor before the food has even been served and will stay there until the lights come on. The more interaction I have with other people with Downs Syndrome I have found that this is a trait that many of them have and he has slowly made me see the world just as he sees it.

There are many moments that I have so much guilt, because I get to do things that he is unable to, I take the smallest of things for granted that can be a huge challenge for Aaron. Being my baby brother he always wanted to do everything that I was doing drive, get a job, go out, go on holidays with his friends which of course is so natural but it isn’t as easy as that. When I got my first job at 16 and started to make some money he use to say to me I’m going to the same thing when I turn 16! Of course this was not the case but when he turned 22 he did it! He got a part time job at his college helping the new students settled in & I have never been prouder of him! He is still working and volunteering keeping very busy. This has allowed Aaron to have the ability to manage money, make his own relationships outside of the family and generally getting a lot more independent.

Honestly, I know how truly blessed we are as a family to have him in our lives I would not change him for the world. Aaron has taught me how to be a better version of myself, how to love and be kinder and to see the world with a little more beauty just as he does. So my advice to anyone that has a loved one with Downs syndrome is embrace the differences because there is much you can learn from one another. I know that sometimes it can be scary because you want to protect them but give them their independence and ensure you teach them how to be independent.

 

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.