Blog - Page 6 of 7 - Raising Hope Designs

Then and Now

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?

Heidi

June 25, 2022

Education… Support or Mainstream?

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.

Heidi

June 17, 2022

Barking Coughs and Runny Noses

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.

Heidi

June 10, 2022

NDIS: Trying to Predict The Future

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.

Heidi

September 17, 2021

Sleep Apnea & Sleep Studies

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.

Heidi

September 10, 2021

Is It My Fault?

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.

Heidi

September 3, 2021

Weakness, Strength & The Push

Parenting Hope has revealed hidden strengths, tested weaknesses, and taught Ben the power of “The Push.” From therapy sessions and hospital visits to daily life with her brothers, this is a heartfelt reflection on love, resilience, and the lessons learned raising a child with Down syndrome. Through exhaustion, tears, and triumphs, the family grows stronger together every day.

Ben Jones

August 27, 2021

Heart Surgery

December 2019 brought more than the Black Summer fires—it brought the biggest challenge yet for our little Hope. After months of uncertainty, hospital visits, and worry, Hope underwent heart surgery. Between fear and hope, exhaustion and relief, this was a chapter that tested us all—but it marked the start of a new, brighter journey for our family.

Heidi

August 20, 2021

Will Hope Be Home For Christmas?

Eight long weeks in hospital, endless prayers, and the question we couldn’t stop asking—“Will she be home for Christmas?” Hope’s fight with a heart defect tested every ounce of strength we had, but her determination (and name) once again lived up to its meaning. This is the story of fear, faith, and the moment our little girl finally came home.

Heidi

August 13, 2021

The NICU

When our twins arrived early, we entered a whole new world—the NICU. Between sleepless nights, expressing milk, and juggling life at home, those first few weeks were a blur of emotions. But even in her tiniest moments, Hope brought light and joy to everyone around her. This is our story of those early days and the incredible care that carried us through.

Heidi

August 7, 2021