Love Doesn’t Count Chromosomes
Breaking Down The Barriers
Every year on March 21st people around the world raise awareness for World Down Syndrome Day. Down Syndrome is caused by an extra copy of chromosome 21. There are many misconceptions about Down Syndrome so raising awareness for this important matter shouldn’t just be kept to one day of the year. We wanted to continue raising awareness by sharing with you Emily’s story. Emily’s experience not only highlights the reality of living with down syndrome but it also shows how all of us can face life’s ups and downs with a positive mindset and determination.
Emily is a friend of mine and a mother to four amazing little humans, although two of them are not quite so little anymore. Her third child, Austin, was born with an extra copy of chromosome 21, which means he has Down Syndrome. I spoke with Emily because I wanted to understand from a mothers perspective what it was like to live with Down Syndrome every day.
It is nothing like the doctor told us when we were given his diagnosis at 4 hours old in neonatal. He gave us a list of negatives and told us all the things that could go wrong but that isn’t who Austin is. His use of language wasn’t great and I literally screamed at the poor doctor. He came back the following day to apologise because he realised that I hadn’t taken the diagnosis very well. 48 hours later we received the test results to confirm the diagnosis of Down Syndrome. That night the doctor was lovely. He stayed very late and answered all of our questions.
By this point Austin was doing much better and so the worry of him being transferred to Bristol on his own had started to fade. When he was little we were in and out of hospital with his health and we had lots of appointments for one thing or another but as he’s got older he has become more resilient. There have been other struggles along the way too, for instance, what you wouldn’t normally consider to be a milestone, takes a lot of effort and therapy to get there when your child has a learning delay. It has also been difficult trying to get the right support and get him into the right school. Honestly though, I wouldn’t change a thing!
An Extra Chromosome An Extra Blessing
Down Syndrome isn’t scary like the doctors make it out to be. I was able to receive some specialist counselling from the hospital to help me during this period. As well as that, I found meeting other local Mums with children the same age as Austin who also have Down Syndrome has really helped. My local friends and my friends online, some of which I have never met, support each other because only someone who has been through it knows how you are truly feeling. The best advice I was given by another mum who has a son a year older than Austin and also has Down Syndrome was simply “Congratulations! Enjoy your baby”.
My other children are amazing with him and have become very caring towards others around them as a result of their relationship with Austin. Every milestone he reaches makes all the effort fade into the background.
I look back now and realise I had outdated ideas of what Down Syndrome was really like. It is not the awful diagnosis that most people think. One extra chromosome means they have that little added extra that makes them extra awesome! That is why I am so passionate about raising awareness for Down Syndrome.
A great place to get more information and support is “Positive about Down Syndrome” It is run by parents who have children with Down Syndrome. Another great charity to support is The Down Syndrome Association.
Positivity and Determination
I have come to know Emily over the past few years and I have seen just a snippet of the ups and downs they have had to face. I have seen a pure determination in her. She rises to every challenge and overcomes all the hurdles that life that puts in the way. Still, she is always generous, caring and supportive to others.
Emily’s experience proves that positive thinking and gratitude can help conquer anxiety. You might not be able to change the situation but you can adjust the way you think. By transforming our thinking we can transform our lives.
There are many practical ways that we can channel negative emotions and turn them into positives. First of all make sure you are getting the support you need from local health services. Meeting others, either online or in your local area that have been through the same thing, can help overcome any feelings of isolation. Others keep a gratitude journal, practice embroidery or use other creative hobbies as a form of daily self-care. Making time for yourself in this was will help you to calm your anxiety and find the rainbow in every storm.
If you have a similar experience to Emily and would like to share your story please feel free to contact us