I didn’t ask to have a child with Down syndrome. Having a child with Down syndrome is not something I ever thought I wanted.
But I was given the gift of Nicholas, and he was all I ever wanted. He is more than I could have imagined. He is perfect, 47 chromosomes and all.
In the midst of grief after receiving a Trisomy 21 (Down syndrome) diagnosis for my child, it was hard to contemplate ever wanting to be an advocate for Down syndrome. But as parents I think we automatically become advocates when our child is born. Throughout history, parents have been advocating for a better world for their children, whether they arrive with a diagnosis or not. We all want our children to be loved and valued for who they are, to be seen in all their awesomeness – the way we see them.
Throughout history, parents have been challenging the ‘but-that’s-how-we’ve-always-done-it’ mindset to make a better world and better life for their children. When many children with Down syndrome were sent to institutions, there were parents who chose to take those babies home and love them. When medical professionals have passed off significant health concerns as being ‘just because of Down syndrome’, parents have decided to find a better way and watched their children grow and thrive. Parents challenge the status quo every day.
I am thankful for the pioneer parents who have come before us, who have chosen to love and advocate for their child with Down syndrome. These days, through the power of the internet and social media, we have such an incredible Down syndrome community around the globe. Every day, I have access to more resources, hear about health advances, and share in the joys, challenges and achievements of people with Down syndrome. No longer is our information regarding Trisomy 21 limited to one outdated book in the local library.
Sadly, while as parents we are watching incredible changes in the world of Down syndrome, there are still many outdated and incorrect stereotypes alive and well. The alarmingly high termination rate following a prenatal diagnosis of Trisomy 21 is just one indication of how dangerous these outdated views can be. However we choose to advocate, it’s important for us to share what life with Down syndrome is really like.
October is Down syndrome awareness month. For the past couple of years, I have contemplated doing the ’31 for 21’ blogging challenge and doing a blog post on each day of October. And each year I realize that committing to such a challenge is going to end in either divorce or insanity 😉 But this year, with a little (okay, a lot) of help from my friends, (and a lot of understanding on the part of my husband), it’s going to happen, and I’d love you to be a part of it.
One of the biggest gifts that Nicholas and Down syndrome have brought to my life is the network of amazing families – locally, nationally and throughout the world. Over the course of October, I am honoured to be able to introduce some of our Australian friends to you and share their stories of life with Down syndrome – stories of rural life, of sisterhood and a wedding, stories of hospital adventures, coming of age and prenatal diagnosis, stories of loss and of love. There will also be a Monday meditation from Belinda over at Save Mum’s Sanity, plus the usual 52 Project and other posts and photos from me. Come and celebrate all kinds of awesome with us in October.
If you’d like to receive blog posts straight into your inbox, put your email address into the box above. We’ll also be hanging out over on the Mummalove Facebook page and on Instagram. We’ll be everywhere. For a whole 31 days 😉 Can’t wait to share it with you x
You are very welcome to share the above image to celebrate Down syndrome awareness month. You can also find it on our Facebook page.