Loves The Chicks and loves to perform
Celebrating Down Syndrome Awareness Month
Down Syndrome Awareness Month
Darcy is 14 years old and we live in Langwarrin, Victoria in Australia.
There are 5 of us in the house…Mum, Dad, Caleb and Blake (his older brothers) and Darcy. He also has a step-sister Bree.
We had a pre-birth diagnosis of Down Syndrome and we decided to get this because we wanted our friends and family to know and to be happy when he was born. We didn’t want any tears on the day of his arrival and by getting the pre-birth diagnosis, that’s exactly what happened.
I met my friend Tina 2 years before Darcy was born and I used to love watching her with her daughter Amy who also has Down Syndrome. I remember asking her many questions including what it was like when they received the diagnosis after she was born.
She told me that it was a huge shock and they went through many different emotions including sorrow. She said looking back, it’s only because it was such a shock, and their lack of knowledge that there were tears.
Amy is extremely loved and always has been and lives her best life with her Mum, Dad and sister.
Because of what Tina shared with me, and when the questions arose, we decided we wanted to find out so we could share with our family and friends before he arrived. We thought it would be a good opportunity for people and us to go through all the emotions that come up without any warning, and to also learn as much as we could and try to be as prepared as possible.
It was also a great opportunity for us to make the bookings we needed which included a pediatrician and early intervention. These were booked and Darcy’s first appointments were during the week he came home.
Because we had the diagnosis early, the day he decided to join our family (which was 5 weeks before his due date), we had so many people in the room with us. Every doctor, nurse and other specialist had students with them because at the time, having a pre-birth diagnosis was not common here.
When Darcy entered the world, he entered it like a rock star letting everyone know he was here. The atmosphere in the room was electric, and it was actually like being at a concert. Cheering and clapping came from everywhere. It was an amazing moment and one we will never forget.
We went through 3 weeks of special care nursery where he thrived. We were so happy to have him home and settled into family life with this gorgeous little bundle very quickly.
Life was always very busy with his older brothers’ sport and school commitments but Darcy never complained and just took all the busy in his stride. He loved all the attention he received from everyone.
At 4 months we hit a problem. We discovered his was aspirating the liquid we were feeding him. Some was going into his stomach which was allowing his slow growth, but the rest was going straight onto his lungs. The dangerous part of it all was that he had actually being doing it since he was born, and he was silently aspirating. This meant he wasn’t coughing like most people do when their drinks and food go down the wrong way.
After many few weeks in and out of hospital we discovered he couldn’t even tolerate the thickest of liquids. He could however tolerate solids which was great. The following weeks and tests later, Darcy had a PEG (also known as a G-Tube), inserted which was the way we would give him his liquids for many years. We never knew if he would ever be able to drink but the specialists said he would as he grew.
Fast forward 13 years and he is now drinking independently, and we have had the PEG removed. It was something that saved his life, and something we were very nervous about having removed, but since that day, he has never looked back.
He’s growing into quite an amazing young man who never ceases to amaze us. He teaches us things each and every day.
He loves ten pin bowling, basketball, going to concerts and the theatre, dressing up, dance and performance, singing and loves playing games and being social.
He loves school and did dual schooling during his primary years. He did one day a week at a mainstream school and the other days at the Special Developmental School he is still at now. We are so proud of how he went through his primary years and he has many of the same memories as his brothers.
We have such great times when we go out with family and friends and he is always the life of the party. He puts a smile on people’s faces wherever we go.
Darcy has had many inclusive experiences including being made part of Blake’s football team from Under 15’s-Under 17’s. Darcy was their mascot and would lead them out onto the field every week. The year they won the premiership, the club included Darcy in the medal presentation. He was the happiest boy in the world that day to be up there with the whole team celebrating and getting photos. He was part of the team in every single way. Those boys made sure he never missed out on anything.
We love it when Darcy achieves goals we are working on, but most of all we love it when he does things that make people look and say “Wow, look at him go”.
He fills our hearts with such pride each and every day.
We love to show people they should see the person first and that he “lives” with Down Syndrome, it doesn’t define him.
My favourite saying is
Give People a Chance and Watch them Shine
and I love to watch him shine bright. He does this every day.
Follow on Darcy on Twitter here.