Blood tests are nothing new for Hope—but that doesn’t make them any easier. With tiny veins that like to hide and wriggle, getting a simple blood sample can turn into a big ordeal. After a failed attempt one day and a waiting room marathon the next, we weren’t sure if it was going to happen. But sometimes, persistence (and a little Mickey Mouse magic) makes all the difference. This is the story of one small vein, two steady hands, and one very brave little girl.
People often have questions when they find out our daughter has Down syndrome—some sweet, some strange, and some that make us giggle. In this post, I’m sharing a few of the real questions we’ve been asked, along with honest thoughts on what they mean, how we respond, and why we don’t mind the curiosity. Because when people ask, it means they want to understand—and that’s always a good thing.
A poem from the perspective of 5-year old Hope. With a longing to join in but struggling to keep up with her peers. With feelings of loneliness, hope, and the joy of inclusion when someone reaches out. A touching reminder of the power of friendship and kindness.
After sharing about Hope and Down syndrome at school, Alexander made a comment on the way home that I wasn’t expecting: “Mum, I’m lucky I wasn’t born with Down syndrome.” It stopped me in my tracks. I understood what he meant—he’s seen how hard Hope works every day. But does that mean he thinks she’s unlucky? It made me question how we talk about Down syndrome, how we shape our kids’ perspectives, and how we show them that having to work harder doesn’t mean being unlucky—it means being strong.
Choosing a school for Hope wasn’t a last-minute decision—it was something we considered from the time she was a baby. We wanted her to grow up with her brothers, to feel included, and to have the support she needed to thrive. When we found a school that didn’t just accept her but truly wanted her, the decision became clear. Now, a few weeks into the school year, we know we made the right choice. Hope is growing, learning, and—most importantly—she is welcomed and loved.
Just recently, it has felt like Hope has just started “getting” things and one of those things, is understanding her name. Hope not only knows what her name is, but she can spell it, sign it, and even write it and while it’s something that she’s been working on for some time, it felt sudden and unexpected when I realised that she could actually do it all.
Hope had her first orientation visit into big school this week. I could probably share a post on all the feelings that go with that, but I’ll save that for another day. Instead, I want to share another little poem…
When we are walking to the car, she will generally go straight to the car ready to climb in. However, there are some mornings that she looks up with her cheeky grin and keeps walking down the driveway. Following directions… it’s not always an easy thing to teach. Here’s a few thoughts.
I wanted to write about something I had recently experienced at a park with Hope. You’ve heard the stories about people taking their kids away and not showing understanding, but the other day we had a completely different experience, which made my day.
Often when we think about security blankets, we think about our kids and their blankets or toys but today I want to talk about my own security blanket. It’s not in the usual form but in the form of a ‘pram’.