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.
Hope started school this week—but she wasn’t the only one. Alexander started too, yet somehow, it hasn’t always felt like it. Why? Because my focus has been split, my attention constantly bouncing between making sure Hope is settled and worrying if Alexander is getting enough from me. The mum guilt has been real, but as I reflect on the first few days, I realise something important—maybe it hasn’t been as bad as I thought.
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.
You see a mum juggling life like a pro—balancing work, school runs, and endless appointments like it’s no big deal. What you don’t see are the late nights spent catching up on work because I’ve had to shuffle everything around for therapies or appointments. Parenting is not always easy. Here’s a few things you don’t see.
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…
While Hope loves giving hugs, it’s important for her to learn who she can and can’t hug for her safety and the comfort of others. In this post, I share our ongoing journey of teaching her about personal space, consent, and finding the balance between allowing her to express love while keeping her safe.