Usually as October kicks off, I’m madly welcoming submissions, and editing and scheduling blog posts and social media for Down syndrome awareness month. For the past three years, I have attempted (thanks to some lovely writer friends, with a surprisingly good rate of consistency) to get a post up every day in October as part of the ’31 for 21’ blogging challenge for Down syndrome awareness. Even last year, in the wake of our quite recent loss of Nicholas, I continued on.
But as October approached this year, I had a real sense of it being time to pass on the baton.
While I will always feel a part of the Down syndrome community in some way because of Nicholas, while I know I will always be welcomed with open arms, while I know I will always advocate for people with Down syndrome, somehow I don’t really belong anymore.
And it’s not through lack of anyone trying to stay in touch or making me feel excluded, it’s just through the loss of my child who was the great connector, my ID card for this awesome T21 club.
I guess it’s part of the ‘collateral damage’ of losing a child. It’s not just the physical child we lose, but also the loss of identity associated with being his parent, the membership in the communities that he was part of, the places we would go together, the ways we would spend our days. Suddenly there is a seismic shift in the Universe and somehow we need to find out who we are again.
As I watched the beautiful kids from the DS community around Australia being photographed in preparation for a special T21 Mums Network project in October, it warmed my heart to see this project in action, but I would be lying if I said it didn’t also make my heart ache that Nicholas’ face wasn’t among them. Don’t get me wrong, the video (which I’ve shared below) is magnificent and I love that all those beautiful faces were being shared with the world, it just stung that Nicholas wasn’t part of it. I have no doubt he would have rocked a photoshoot.
Ben and I have both had recent experiences of being out and seeing a child who has Down syndrome and desperately wanting to say to the child’s parents, “hey, we’re in that club too.” Except we’re not really anymore. And how do we explain coherently and without tears that we were lucky enough to have our own child with Down syndrome and yet he’s not with us anymore, without making them worry that something may happen to their child too? These are just some of the swirling whirl of thoughts that pass through our heads in those moments, and the brief opportunity for connection passes by.
While we want to keep our connection with the amazing Down syndrome community, the truth is that some days seeing those beautiful kids with the almond shaped eyes, and hearing about both the joys and the challenges of life with them, is just plain hard. It’s just another reminder of what we no longer have.
I created the above ‘Life is Better with You’ banner image and put it up on our Facebook page at the beginning of the month. A little while ago, someone had started the #lifeisbeautifulwithyou campaign on social media to highlight how much we love having someone with Down syndrome in our lives (and, just quietly, I completely stuffed up the hashtag when I made this banner, but decided to run with my new slogan 😉 . We have obviously found out the hard way about how it feels without the chromosomally enhanced, super gorgeous kid we knew and loved in our lives. But, even when he was here, we really did appreciate how much Nicholas had enriched our lives just by being in it. Life really was better with him.
To celebrate Down syndrome awareness month, I’d love to give away a copy of my hand lettered ‘Life is Better with You’ print. Write a comment below with the name of the person who enhances your life and you’ll go in the draw to win. The winner will be emailed and I’ll announce the winner on the Mummalove Facebook page next Wednesday, 8 November.
So, as October has now come and gone, I wanted to acknowledge the fact that I still celebrate the gift of Down syndrome quietly even if I haven’t blogged about it each day of the month.
I am so grateful for the ‘imperfect’ child who was bestowed upon us, even though we may have been hesitant to receive such a gift at the time, and even though we only had four short years with him. I am so grateful for the incredible community of families across the world who have a family member with Down syndrome, who they love fiercely and advocate for daily. I am so grateful for the people who have had a child with Down syndrome and become leaders in the T21 community, and through their actions, help make the world a bit easier for the families yet to follow. And I am so so grateful for all the amazing individuals in the world who are rocking an extra chromosome. They truly do make the world a better place.
I’ll leave you with a plethora of divine faces on this beautiful video created by the T21 Mums Network. The images were captured by talented photographers all over the country, who lovingly donated their time to this project of love. Congratulations to everyone who made it happen.
T21 Mum Australia Network
This month is World Down Syndrome Awareness Month and we would like to give you a glimpse into our lives. Lives in which we have children, just like yours, who just happen to have a little extra. We are not super mums any more than the rest of you are. We still hang out the washing, get the groceries, go to work, feed the kids and go on holidays. We want you to take some time to look around and question what you really know about Down syndrome.
Here at T21 Mum Australia would like to see a change in the negative stigma associated with Down syndrome. Children with Down syndrome are not lazy, stubborn, and definitely not always happy. Children with Down syndrome don’t always like hugs or naturally like music. These are all stereotypes associated with the diagnosis.
Children with Down syndrome are just children. They are individuals with ranges of abilities, interests and personalities.
As new and expectant mums of children with Down syndrome, we all share a common bond; the need to connect.
Down syndrome is the most common chromosomal condition, with a diagnosis rate of 1:1100 births in Australia, yet there is no consistency in information offered to mums at the point of diagnosis.
It can be a lonely place when you first discover your unborn baby or newborn has Down syndrome and T21 Mum Australia provides a unique solution to this; connecting mums to each other through social media to get immediate support from other women who have travelled this path, and connection to state Down syndrome associations for further resources.
We encourage community participation, we run events (both online and in real life), we celebrate milestones, and we share true friendships.
We hope that by sharing this message we can help women who are alone and needing the connection to others to find the support they need.
#wdsam #dsam #trisomy21 #t21 #downsyndrome #t21mumaustralia #t21mumarmy #ourkidsrock #downsyndromeaustralia #facesofthefuture
Posted by T21 Mum Australia Network on Saturday, 7 October 2017
PS. If you would like to read any of the wonderful blog posts written by families in the Australian T21 community on the Mummalove blog during October over the past few years, I have put a link to ‘DS Awareness Posts’ on the menu bar for easy access. I’ll leave it up there until the end of November.