It’s been a crazy, exhausting week with sick kids and no sleep, but I still wanted to write something—so here it is! A little insight into our sweet and sassy girl, Hope. From her early arrival and heart surgery to her love of dancing and chocolate, here are 10 random things you may (or may not) know about Hope.
Last week, we shared the emotional experience of receiving assessment results that compare Hope’s development to typical children. But this week, we’re looking at a different kind of report—one that truly highlights Hope’s progress and abilities. Her daycare report wasn’t about measuring delays; it was about celebrating her growth, friendships, and personality. From her empathy and turn-taking to her love of dress-ups and puzzles, this report reminded us that Hope is thriving in her own way.
“Your 3-year-old is currently at the level of an 18-month-old.”
Reading those words shattered me. That night, as I stood in the shower, tears mixed with the rushing water, my mind raced with doubts. Are all the therapies, the endless appointments, the exhaustion—are they making a difference? But then, clarity hit me. If we didn’t fight for Hope, if we didn’t push through, she wouldn’t be where she is today. This journey isn’t easy, but Hope is strong, and we are not giving up.
Helping Hope walk has been our big focus lately, and every session brings new challenges and triumphs. This week at physiotherapy, she tackled stepping stones, side-stepping, and her favourite game—escaping down the hallway! We worked hard, took breaks, and ended the session with dancing. Progress may feel slow, but every step counts. And now, at home, we’re making little changes to encourage her to walk more. It’s all about making walking feel natural for her. She’s getting stronger, and we won’t stop cheering her on!
Decades ago, children with Down syndrome were often placed in institutions, hidden from society and denied basic rights. Parents were pressured to give up their babies, and little was known about their true potential. Fast forward to today, and we see incredible progress—better healthcare, education, and support services allowing individuals with Down syndrome to live fuller, more independent lives. But with medical advances also comes a heartbreaking reality: a drastic decline in birth rates due to high termination rates. Have we truly reached acceptance, or is there still more work to be done?
As we search for the right school for Lincoln, we’re also thinking about Hope and Alexander. The big question? Should Hope go to a mainstream or support school? For us, inclusion is key, and we want to give her every opportunity to be part of the world around her. But we also know the challenges. In this post, we share our thoughts, fears, and hopes for Hope’s education.
No one likes being sick, and when all three kids go down one after the other, it feels like there’s no break. For Hope, a simple cough can turn into something more serious, so when her temperature spiked and her oxygen dropped, we knew it was time for the hospital. A night in emergency, a pneumonia scare, and some unexpected positives—this is our latest hospital journey with Hope.
Receiving an NDIS booklet in the hospital after Hope’s birth was overwhelming. Between learning about therapies, managing appointments, and adjusting to life with a newborn, it was hard to know where to start. Over time, we navigated early intervention, self-managed funds, and unexpected needs, discovering how the NDIS could support Hope’s growth—from speech and physiotherapy to occupational therapy. While complex and sometimes confusing, the NDIS helps make the impossible possible, giving Hope a chance to reach her milestones and live her best life.
Hope’s cardiologist raised concerns about her lungs, which led to a series of sleep studies. What began as a routine check uncovered severe obstructive sleep apnea, showing just how common and hidden this condition is in children with Down syndrome. From home monitors to a full hospital study, the diagnosis meant adjustments, including a CPAP machine, to ensure Hope’s breathing and development weren’t affected. This story highlights the importance of awareness, follow-ups, and advocacy for children’s health.
After Hope’s Down syndrome diagnosis, the question “Is it my fault?” haunted me. Through self-doubt, guilt, and uncertainty, I learned it wasn’t anyone’s fault. This post shares my journey toward acceptance, understanding the science behind Down syndrome, and a message of hope for parents facing the same fears: your child is a gift, and you will grow together in ways you never imagined.