Navigating Parenthood and Disability: The Story Behind The 139 Collective

When Igraine and Josh welcomed their first child in 2018, it was far from the parenting journey they had imagined.

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“Our first son, Josiah, was born in 2018, and he had a very complicated pregnancy,” Igraine told Chris from Hope Drive.

“From about 16 weeks in utero, a lot of health complications came up. We were even given suggestions that we might want to terminate the pregnancy. Obviously, we didn’t do that.”

Josiah was born needing urgent medical care, including heart surgery, and began having seizures at just two weeks old. Eventually, he was diagnosed with a rare genetic condition called PACS1 syndrome.

Those early days were a blur of hospital stays, therapy appointments, and adjusting to life as new parents. “We were just adjusting to being new parents and sleep-deprived and all of that,” she said. “It was a completely new reality—totally different to what we had expected parenting to look like.”

Igraine and Josh searched for other Christian parents walking a similar path. “It was really isolating… We thought, we need to get in contact with other Christian parents who’ve navigated these circumstances.”

Finding a place to belong

In the midst of the challenges, Igraine and her husband searched for other Christian parents walking a similar path. “It was really isolating,” she said. “We thought, we need to get in contact with other Christian parents who’ve navigated these circumstances.”

But despite searching online and asking around, they couldn’t find anything. “We thought, they must be out there. We’ll just put out some feelers with a Facebook group and see what happens.”

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That small step in 2020 became “The 139 Collective” — a thriving online community that now has over 700 members from across Australia. It brings together Christians from all denominations and families representing a wide range of disabilities.

The group has become a space for open conversation. “There’s theological discussion, talking about discipleship for your kids, what kids ministry looks like, how to stay involved in church when things feel hard, and processing grief,” Igraine explained.

The pair founded “The 139 Collective” — an online community bringing together Christians from all denominations and representing a wide range of disabilities.

Why “139”?

The name comes from Psalm 139, a passage that has encouraged Igraine deeply as a parent.

“‘For you created my inmost being, you knit me together in my mother’s womb… I am fearfully and wonderfully made,’” she quoted.

“We really believe that strongly for all our children—that God has made them fearfully and wonderfully. He knew our son while he was still in utero.

He has good plans for him, and that gives us a lot of hope and joy.”

The 139 Collective conference will be held on Saturday, 6 September, at Norwest Anglican Church, Sydney.

From online to their first conference

Over the years, the collective hosted casual gatherings like park meet-ups and dinners. But this September, they’re taking a big step forward.

“This is our first-ever conference,” Igraine said with excitement. “We’ve always had this yearning to do something more substantial—something where we can encourage each other with truth from God’s word.”

With the support of Norwest Anglican Church, the conference will be held on Saturday, 6 September, in Sydney. The line-up includes Sam Davidson, who has been pioneering accessible kids’ ministry at Norwest, and Kirk and Lisa Patston, parents of a son with a disability and founders of Our Place Christian Communities.

The day will include electives designed for the wide variety of disabilities represented in the community. “More than just the speakers, we want the day to be a chance for parents to have space to process, think, pray, and connect,” Igraine said. “There’ll be time for discussion, fellowship, and a care team available to pray for people.”

“More than just the speakers, we want the day to be a chance for parents to have space to process, think, pray, and connect.”

Grief and joy, side by side

When asked what she hopes parents will take away from the day, Igraine reflected on her own journey.

“I hope parents go away encouraged in their faith—that God sees them in their daily circumstances, that He has a good plan for them and their children,” she said.

“For me, it’s been a journey of intertwining grief and joy. There’s grief I need to bring to God and allow Him to heal, but also amazing joy because I love my son and see God working in his life. We want to make space for both.”

How to support the event

Not everyone will be able to attend, but Igraine says there are many ways to help. “If you know someone who would benefit, pass on the details. You might even buy a ticket for them or offer to look after their kids for the day so they can come. And please, pray for us.”

Running the first conference is both exciting and stretching. “We’re praying people will go away fuelled up with hope,” she said.

The 139 Collective’s first conference will be held on Saturday, 6 September, at Norwest Anglican Church, Sydney. Tickets are available via The 139 Collective’s website.

Listen to the full conversation in the player above.

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