Category: Guest Posts

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.

I remember when Saajan was first born – aside from the shock of his diagnosis, my mind was flooded with deep dark fears. Fears that alone terrified me in to a further state of shock as I began to believe they’d unfold as my reality. Fears that I couldn’t rationalise with. I was terrified of rejection, of loss, of the unknown. Would we ever travel? Would my marriage even last? How would this impact Arjun!?

Hayley’s Facebook page, I am River, was like a look in in to our future – like us, they have an older son, Skyler, who has a younger brother, River who happens to have Down Syndrome. I felt comforted in seeing Skyler interact with River like regular brothers!

 

Like us, they love to travel – except a safari is a stone’s throw from their home in beautiful Tanzania! I love watching River grow and develop without the intense pressure of multiple therapies as frequently as we have here – don’t get me wrong, I’m super grateful, BUT, there is something so beautiful about receiving therapy through nature!

Below, Hayley shares her story and what Down Syndrome DIDN’T bring to their family.

When you first learn that your child has Down syndrome, you automatically look to the future and what it holds for you and your family. The hopes and dreams you had for your child’s life feel like a thing of the past, and your visions of school, university, career, marriage and grandchildren wither away. They can’t happen now can they? You are overloaded with terrifying medical information, the unwanted opinions of others who have no experience with Down syndrome, and you can’t help but invasion the outdated vision of the condition that society has led us to believe is true. The worst thing you will do is search Google, but you will do it anyway.

You are scared. You are uneducated. Your child is yet to prove you wrong.

You will have so many questions, and you will imagine the worst possible answers for every single one of them. Will my baby be healthy? Will my child be able to live a happy life? Will my child have friends? Will my child be able to learn or understand? Will my other children be negatively affected? What does this mean for my marriage?

Time will absolutely dilute these fears, and your child will teach you everyday that your fears were unfounded. They will show you just how amazing they are and you will feel guilty for ever having doubted them in the first place! But those early days are hard. During those times, and even for periods as they grow up, the worrying and fears can take you to a dark place. Every parent worries, for those who have been told that everything they envisioned for their life has changed, it’s a whole other level.

I wanted to take some time to tell you what Down syndrome has meant for our family, and what it HASN’T brought to our lives. It hasn’t brought many negative things that people may expect it to, and I’m sure there are many people out there who may be surprised with all the positives it has brought.

My son is breaking down barriers, squashing those myths and surprising me every single day. Eyes are opening!

Down syndrome hasn’t lowered my expectations.

I have expectations of both of my children, my eldest and my youngest who has Down syndrome. I expect them both to be kind, I expect them both to be respectful and I expect them both to be helpers. I expect both of my sons to work hard at whatever they choose to do in life, I expect them both to find something they are passionate about and I expect them both to challenge themselves and take risks. I expect them both to reach their full potential in school and I expect them both to be successful at something. It doesn’t matter what, I don’t care what it is, but just something. I expect them both to follow their dreams and to be proud of who they are, I expect them both to be humble and I expect them both to always accept others no matter what their differences may be.

I expect both of my sons to be happy.

My expectations have changed since having River, in the sense that now they are so much higher! I guess I was guilty of wanting the ‘norm’ before he was born, as in university, career, marriage, kids etc. Now I understand that being a good person and being the best version ourselves is what’s really important. River may have Down syndrome, but I still expect him to be the best that he can be.

Down syndrome hasn’t created unhappy siblings

My eldest son Skyler could not be a better brother to River, he adores him. I always say he was just for with a gentle soul and he hasn’t got an ounce of nastiness in him. He really is just a wonderful brother and I feel incredibly lucky that he’s mine.

Now do I feel that he’s missing out on anything? Absolutely not! We are a family, we look out for each other and support each other always. That’s what families do.

 

Skyler has known about River having Down syndrome since the beginning, in fact he was there when the doctor confirmed it. It never once crossed my mind to not tell him, it was never something that we were worried about discussing with him or thought he couldn’t handle. I didn’t want him to see it as a big deal, and he hasn’t, ever. He is growing up to be a kind, thoughtful and excepting boy and I just know he is going to be an incredible adult.

Skyler is one of the happiest and fun loving kids I know, he just loves life. Do I worry about the responsibility he may have as an adult regarding River? Of course I do. But at the same time, I just know he will always be there for him, that’s what brothers do. Both of my children are loved and happy, and they will both benefit from having each other.

Down syndrome hasn’t caused marriage troubles

Me and my husband have always been tight, but since having River we are unbreakable. I just feel that our family unit is strong, and anything that we ever have to face in the future will be done together. It’s as if River has shown us how to really appreciate each other and be thankful for the small things, he shows us what is really important.

Its often assumed that having a child with Down syndrome will be a huge strain on a marriage, and that many end in divorce. The reality is actually the opposite, and most family units become stronger and the divorce rate is significantly lower.

I’ve never resented Reagan, or him me for the things we have faced with a disabled son and it’s never come even close to ripping us apart. Its so important to talk about you fears, and to be honest and understanding. If you can manage that, then your child will be your greatest teacher and teach you all the other lessons you’ll ever need.

There will be marriages that fall apart, but the truth is that it probably wasn’t Down syndrome that caused it and they would have broken down anyway at some point. I know a lot of couples going strong and loving theirs lives together, and with their children.

Down syndrome hasn’t halted our love of travel

We travel all the time! River is 3 years old and he’s already travelled all over the UK, Tanzania, Kenya, Dubai and Amsterdam. He’s been flying long haul since he was just weeks old and loves a good holiday. I see a future of travel and seeing the world for my children, and Down syndrome will not stop River from learning about the many places earth has to offer.

Additional needs do not have to mean you can’t travel, it may need extra planning and research but you can totally be a travelling family.

Down syndrome hasn’t created strained friendships

A lot of friendships can break down when you have a child with Down syndrome, and it can be for various reasons. Firstly, friends just might not know what to say and be scared of offending you. Also, parents to newly diagnosed children may keep a distance, they may feel a sadness when faced with the typically developing children of their friends and just need time to process things. Or to be blunt, they may just not have been the great friends you thought they were in the first place.

I don’t have any ‘special needs mum’ friends. None. I find that hard at times, but we live overseas and I just don’t know anyone with a family like mine. River also has no friends with Down syndrome, another thing that makes me sad.

But what we do have are friends that couldn’t care less that we are ‘different’, that my child is ‘different’ to theirs. I’ve never once been made to feel comfortable or that I can’t talk about my sons progress, and at the same time I have never felt any jealousy or hurt watching their children develop in a typical way. That’s honestly the truth. Every parent deserves to brag about their children and celebrate their achievements, and I would hate to think that a friend thought they couldn’t care things with me because of River. I’ve always made a conscious effort to answer all quietens and never be offended when people mean well.

Treasure your friendships. Being a parent to a child with additional needs can be lonely and at times frightening, you needs you friends.

Down syndrome hasn’t made me sad at the delayed milestones

Up until River turned 1, he was pretty much achieving his milestones at a typical time. On the slower end, but he wasn’t significantly delayed. And then he was. After his first birthday everything slowed down and his milestones were not hit at the same time as his peers. He crawled at 1, but didn’t walk until he was 2.5. And at 3 years old now he is developmentally way behind his peers.

But him having Down syndrome gave me the ability to throw away the milestones charts, it just wasn’t important to me. There is so much pressure on parents today in regards to their babies achievements, and to not be part of that was such a relief! My son could develop at his own pace and we were just able to enjoy those moments. They are so exciting as he works so hard to get there! I know River will achieve everything he sets out to, with his determination there is no chance of him failing. We just have to wait a little longer and that is totally fine with me.

Down syndrome hasn’t made us weak

I have a fire in my belly since River was born, he just seemed to ignite a spark in me to do whatever it takes to make his life a little easier. As a family we are confident, outgoing and love an adventure and having a child with Down syndrome has not changed that. Actually, it has made us all the more determined to enjoy life and prove to others that we are not burdened. We are hugely lucky!

And as a mother I am stronger than I have ever been, and I will fight for my children for as long as I am able.

Obviously having a child with additional needs comes with worries, I would never make light of that. There are medical issues that are associated with Down syndrome and I often worry about what will happen when I am no longer here. The fact of the matter is that nobody knows what the future holds, I can’t tell you for certain what life holds for either of my children and neither can you. Any of us, and any of our children can become disabled at anytime, and any of our lives can change at any point. Do we live in fear of that? Do we spend our whole time worrying about what may or may not happen? Or do grab hold of life, show our children to be exactly who they are meant to be, and live the life we were given with as much happiness as we can.

Down syndrome may come with struggles and it may make life harder at times, but challenges do not have to equate to unhappiness. It certainly hasn’t for our family and hundreds of other families out there who find themselves in our position. If you feel sorry for families like mine, or if you feel sorry for people with Down syndrome then stop, because your pity is wasted. Pay attention, look and learn, and you will see that we are doing just fine as we are and wouldn’t change a thing.

 

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 must have stumbled upon Felicity’s mummy’s instagram account pretty soon after we had Saajan. Accounts like these really helped to calm my nerves. Felicity is a a year older than Saajan and boy is she enjoying life! Her beautiful face combined with her sassy personality make her so endearing! One of my most favourite things about Felicity is her dance moves – I could watch her for days!

Below, Felicity’s daddy has shared their birth diagnosis from a father’s perspective.

We learned of our daughter’s diagnosis at birth. The pregnancy was going fine until the final doctor visit. My wife had not been feeling well that day so the doctor sent her to the hospital to get some tests done. That is when this roller coaster of emotions started. The doctor came into the room after looking at the ultrasound and said “you are not going home today, the baby has fluid around her lung and we have to induce labor now”. Labor was induced and as it was progressing our Felicity’s heart rate would decrease so the decision was made to do a c-section.

At 2:39AM August 7th our lives changed forever. We heard the first cries of our baby girl. We would only see her for a few brief seconds before the NICU doctor and nurses started prepping her to be transferred to the NICU, where she would spend the first twelve days of her life. As they were prepping her the doctor turns to me and says “she shows characteristics of Down Syndrome”. Shocked I looked at my wife like what did he just say? So I asked him what he said and he said it again. I didn’t even know what to say.

The fluid around her lung seemed like nothing now; the doctors can fix that, Down Syndrome is for the rest of her life. So I followed the doctor and nurses to the NICU with Felicity while my wife finished up in surgery and was transported back to the room. As I looked at her through the plastic enclosure she was in and all the wires and tubes in her I thought to myself, “You’re my daughter and I am going to take care of you no matter what”. My wife took it a little harder than I did. She kept saying I’m sorry and what are we going to do? I would simply reply we are going to raise our daughter. I had my moments of breakdown though. I would cry in the shower so nobody would see because I wanted to be the strong one.

At first receiving a diagnosis like this feels like the end of the world and how are we gonna raise a child that has something can’t be fixed. This is our first child, we don’t know how to be parents let alone a parent to a child with Down Syndrome. As time goes by it does get easier. It’s not the end of the world. It’s the start of an incredible life that I am glad to be a part of. This life has its ups and downs but doesn’t everyone’s?

You can also read another post on a fathers perspective where Preetam shared our diagnosis when Saajan was just two days old.

You know you see propaganda flying around sometimes about how people with Down Syndrome suffer? How they have no quality of life?  How they are a burden?

I’m so honoured to be sharing a real life account by someone who is living with Down Syndrome.  Claire is a fun loving 31 year old who is enjoying life. Claire is aware of her extra chromosome and it definitely doesn’t hold her back – she’s so proud of having Down Syndrome and who she is.

Claire sent me a video message not so long ago which I shared on Instagram – it echoes the advice that she gives at the end of her blog post. Life is beautiful, focus on it!

Below Claire shares a little insight in to her life.

I’ve had Down syndrome for years, it has changed life – people treating me as an equal.

I love going to college I love it to pieces especially Solihull college they treat me like one of them. I also like how they treat me like a young adult and as well they treat me maturely which I really like. I do dancersize on Wednesday and performing arts, we are doing a production of music from around the world, which I love all about music.

I have made lots of friends at college.

Matthew my boyfriend also has Down syndrome our mom both held meetings for other parents of babies with DS, he is my one true love, I love his personality so much

I love living at with my mom and my five cats Jasmine, Junior, Tiffany, Robyn Fudge I love watching dvd’s and watching You Tube my favourite programme of all time has to be the Big Bang Theory. And I love listening to music especially A1 .

I love love love going out to the cinemas with friends and going out for meals out my friends and boyfriend and having a lovely glass of wine! But not too much! And I love partying and dancing, I love being round at Matthews.

My life is absolutely fabulous, I am an auntie to two twins who are both 6, I go to drama with them where I work (I used to go there when I was younger) I help them to build up characters and rehearse and dance to music. I get supported by a group called Brighter life where I do one to one sessions and go to the gym quite a lot with them so I am healthy, the on some evenings we go for food and the cinemas which I love. I love the film clueless.

I love my mom I go on holidays with mom and my family like to the Caribbean we love cruises, she looks after me when I’m ill, she is the mother I always love!

New mum advice – Be positive, don’t be scared and focus on how beautiful you and your baby are.

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.