Was your pregnancy with Oscar similar to your pregnancy with Poppy? What do you remember about that time?
Oscar’s Down syndrome was never picked up in my scans or screenings ( I was considered low risk) so my pregnancy was largely the same as Poppy. I suffered from terrible morning sickness the whole way through and never enjoy being pregnant. Oscar, like Poppy, arrived exactly 2 days early on 1 August 2012 at 3pm. It was a straightforward pregnancy and like all mothers, I was desperate with excitement at meeting our new baby.
Describe the first year with Oscar as a baby...
The first year with Oscar was the usual mix of sleep deprivation and tiredness. In the first few months, Oscar was heavily monitored by doctors and hospital visits became part of our weekly routine. With any syndrome, there is a range of symptoms and you can have one or all of them so it was everyone’s job to monitor his health based on the characteristics of Down syndrome. Babies with Down syndrome have fairly weak immune systems, low muscle tone and many are born with heart defects. It was a crash course in Down syndrome as well as getting to know our baby son but thankfully Oscar was a very healthy and happy baby with no major health issues. When he was five months old, we decided to move back to Perth for a while. It was fantastic to live a more outdoors lifestyle, breathing in the clean air and enjoying the big open space of Australia and I’m certain this helped flush out any health issues susceptible for babies with Down syndrome.
You’ve said that having a child with Down syndrome was “the best thing to happen to your family"...
I have often said our greatest pain is our greatest teacher and this is certainly true of the surprise diagnosis with Oscar. We did not see this coming. We were rocked to the core. Everything we knew was dismantled in seconds.
The arrival of Oscar changed the entire dynamic of our family, our relationship and the relationship we had with our friends and family. Initially, we completely shut down, taking time to process the diagnosis and attempted to navigate our way through the grief. And then one day something miraculous happened. Our perspective shifted. The somewhat daunting realisation that this baby needed us and this human being would need us to be his biggest advocates sunk in. I began to really educate myself on Down syndrome, focusing on how best to unlock his potential. If I wanted to live my best life, so should he.
Oscar is the essence of our family. His big sister Poppy is wise beyond her years and she loves him fiercely. My husband and I treat him, for the most part, like a ‘normal’ child. We take him everywhere we go, he gets involved in every sport and every opportunity available to him, he has lots of friends and is thriving in mainstream school. We don’t set limits and dream big for him. Above all, he has taught us all to live in the moment.
It’s often in moments of grief and sadness that help transform people for the better. How would you say having Oscar has changed you as a person?
I am less judgemental, I try to live in the moment and Oscar has shown me that love is all we need in life.
Can you describe a typical day in your household at the moment...
To say Oscar is an early bird is an understatement! He rises at 5.30am (eek!!) and we have just crossed that threshold where he can take himself downstairs and play safely on his own for a little while. I usually wake around 6am and am routinely greeted with the biggest bear hug you can imagine from him. While his big sister Poppy sleeps on (do I really have a teenager already, at 9?), Oscar and I discuss breakfast options. His all time favourite are his pancakes with Nutella and whilst this is a weekend treat, he still tries it on and asks every single morning. We have had to hide the Nutella after numerous ‘incidents’! I make some coffee and sit with Oscar and practice his spelling or writing or maths. He is currently keeping up with his year 1 curriculum and we are working hard to keep him there. We then wake Poppy up and try and subdue her grumpiness and that is no easy task! We then dress for school, taking time to let Oscar dress himself, brush teeth, style the hair (Oscar that is) and then off to school. Poppy and Oscar attend different schools so it’s a double drop off for me in the morning. Oscar is wonderfully supported at his school, has lots of friends and a girlfriend or two! Oscar is football mad and attends football club after school twice a week. We have started to support a local team and he has recently been invited by the team to walk out with the players on to the pitch in front of a 10,000 strong crowd. Dream big!
What is Poppy and Oscar’s relationship like?
Poppy and Oscar are very close, connected by a love of wrestling! Interestingly, Poppy is an introvert and Oscar is the extrovert so together they make a great team. Oscar adores and looks up to his big sister and I focus on supporting Poppy along the way with information about Down syndrome, the kind of help Oscar needs from us and preparing her for the future.
Can you tell us what one of the most surprising things is about having a child with Down syndrome?
Kids with Down syndrome can achieve more than you think! Well I’m here today to smash the stereotypes out there! Having a child with Down syndrome is by no means the worst thing that can happen to you. Given the right support, particularly early intervention, children with Down syndrome can and will continue to contribute to our society in a meaningful way. In those first few years with Oscar I was fearful of what he couldn’t do, always preparing myself for the worst possible outcome. Would he ever walk? Yes he did just before his 2nd birthday and now competes in running races at his school. Will he ever talk? Yes, we are slowly getting there but he holds his own in the school productions! Will he always be behind developmentally? We don’t know yet but he did just win an art prize at school, selected anonymously by a London artist and up against his entire school of ‘normal’ kids. Historically, children with Down syndrome were never given the opportunity to access education and early intervention support. Today, these kids are in mainstream school, going to university, getting jobs, living independently and contributing to society. We are hopeful Oscar will continue to blaze a trail.
Children seem to teach us things about ourselves that we never really thought about before. What has Oscar taught you so far?
I often have complete strangers stop me in the street and tell me how lucky I am to have a child like Oscar. These kids are so full of love and kindness that it is breathtaking. The world doesn’t need more perfect kids, it needs kids like Oscar who show unconditional, fearless love and kindness.
If there’s one thing you could tell parents embarking on a similar journey to yours right now, what would it be?
Buckle yourself in, it’s quite the journey. You’ll need to pack plenty of patience and resilience but you will be rewarded many, many times over. I’m often asked what it’s like coping with a diagnosis like Oscar’s. This poem has been told time and time again to new parents like us, and it still resonates today:
Welcome to Holland
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.