Better with You {Down syndrome awareness month}

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 Mums Australia

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.

  • Amy Thompson Knueppel

    Big, big hugs. We will always consider you as part of our club because of Nicholas. Wesley brings the sparkle to our lives and I just want you to know that Nicholas is missed. xo

    • mummalove

      Thanks so much Amy. Aren’t we lucky to know and love our sparkly boys. So glad Nicholas helped me find such a great club x

    • Thanks so much Amy. Aren’t we lucky to know and love our sparkly boys. So glad Nicholas helped me find such a great club x

  • Emjay Morrissey

    Hey there beautiful. I managed to get through reading this with tears in my eyes 😢 You are an incredibly strong woman for continuing to write posts like this. You’ve left us all with amazing words that were so beautifully written.

    My daughter is the one who makes life better. Taylah Grace is 3 and was blessed with designer genes. She has taught me and everyone who meets her to view life in a whole new light. When it’s the simplest things that make her day, it reminds us it’s the little things in life that matters the most.

    She’s a total diva in the making but she’s so worth it.

    https://uploads.disquscdn.com/images/5fe97a32e94d90c10287e1688bfbbf39d3daeafff5382147d08cd265f9864c04.jpg

    • mummalove

      Well, who can blame her for being a diva when she’s that gorgeous, hey?? 😉 Thank you for your beautiful words, and for sharing Taylah with me. Much love x

    • Well, who can blame her for being a diva when she’s that gorgeous, hey?? 😉 Thank you for your beautiful words, and for sharing Taylah with me. Much love x

  • Emma Graham

    Life is definitely better with my lil bro Alex… he continues to amaze us with all he does and this year became the business owner of Mr Alexander’s and makes the most amazing cakes… the lifelong friends we have made along our families journey is the absolute cherry on top… love

  • annie h

    I am also part of this club – my Bryce would be 19 this November – He lived for 2 short weeks. I know exactly how you feel – I have to restrain myself when I see someone with a child who has Down Syndrome – not to let my emotions spill out. And I do restrain myself, because it has occurred to me also that my loss could cause them fear. Nicholas was such a beautiful lad! I love to read your posts and see his pictures. I look at Nicholas’ brothers with joy and sadness – as I do with Bryce’s sisters and brother – and I know how important remembrance is for these kiddos – because they are all members of our families and they are always in our thoughts and our hearts. Hugs to you! Here’s to Nicholas and Bryce!

    • mummalove

      Thank you for your beautiful words, and I’m so sorry that you’re also part of the club. I agree – I’m sure Bryce and Nicholas will always be part of our thoughts, hearts and families, even if their time with us was far too short. Much love to you and your family.

      PS. You won the ‘Life is Better with You’ print! I’ll be in touch via email to arrange delivery x

    • Thank you for your beautiful words, and I’m so sorry that you’re also part of the club. I agree – I’m sure Bryce and Nicholas will always be part of our thoughts, hearts and families, even if their time with us was far too short. Much love to you and your family.

      PS. You won the ‘Life is Better with You’ print! I’ll be in touch via email to arrange delivery x

  • Kristin

    I found your blog after endless googling anything with subject Down Syndrome. Our little one was diagnosed when I was 34 weeks pregnant. It was a bad time and I feel guilty about how I felt then. Angry as well. I just loved Nicholas with his blonde hair and the lightness celebrated in your photographs. I knew I would have to start something for my little one too. I wish I was a better writer but I’m trying to make up with my photographs. That’s my job after all. I would do anything for my son. He is the most precious gift I could have ever asked for. I’m working hard on making sure his life will be full with love and opportunities. And we will continue reading your blog. Much love from Kristin & Gwilym

    https://m.facebook.com/gwilymbirkett/?locale2=en_GB

    • mummalove

      Thank you so much Kristin. I’m so glad you found Nicholas when you needed him. He was always so good at spreading love and light. I’ve no doubt Gwilym’s life will indeed be full of love and opportunities. Sending much love to you and your gorgeous boy x

    • Thank you so much Kristin. I’m so glad you found Nicholas when you needed him. He was always so good at spreading love and light. I’ve no doubt Gwilym’s life will indeed be full of love and opportunities. Sending much love to you and your gorgeous boy x

  • Kari Hann

    Our little man Rowan makes life SO much better. I have been following your journey since soon after he was born in November 2014 and we learned of his extra chromosome. Nicholas was one of the first faces I remember seeing when I did the dreaded “Down syndrome” Google search in the days after his birth. It brought me happiness in a very (thankfully brief) dark time. I think about your family and Nicholas often. Sending you lots of love from Canada. xoxo https://uploads.disquscdn.com/images/527fcbefbc8ce395d3b1481a757013653ebe498d5311855b34d6c5d0d767f9ba.jpg

    • mummalove

      Oh my, Rowan is divine! Thank you for sharing that beautiful face with me, and for your lovely words. Sending love back to you in Canada x

    • Oh my, Rowan is divine! Thank you for sharing that beautiful face with me, and for your lovely words. Sending love back to you in Canada x

  • A club you were terrified to join and now desperately miss being an active part of. Life is such a mystery, Annie, and never moreso than when I try to figure out why Nicholas’ light was no longer required here in the physical sense. It seems like he would have changed the world. But then I stop and realise that he already did – my world included.

    So much love.

    • mummalove

      Indeed. Thank you for your beautiful words, beautiful mumma xx

    • Indeed. Thank you for your beautiful words, beautiful mumma xx