Families living with disability: you are not alone

A new group shares the ‘real joy and the real grief’

When Igraine and Josh Lim went for a routine pregnancy scan of their first child – a baby boy – they were confronted with a terrifying truth.

“We found that there was a whole lot of fluid in his chest that was compressing his lungs. The doctors had concerns about why that was the case, and also that it would mean that his lungs weren’t developing properly,” Igraine tells Eternity.

“Over the next few weeks we had multiple procedures to drain the fluid out from his chest in utero. But it kept recurring for most of the pregnancy. We were very unsure halfway through whether he was going to survive.”

Unfortunately, at that early stage, genetic testing could not determine if there were underlying conditions responsible for these worrying developments. And so, Igraine says, doctors had “a lot of conversations” with them “about whether we wanted to continue with the pregnancy, particularly before the 20-week mark.”

As Christians (and members of Newington Anglican Church in western Sydney), the couple decided to continue with the pregnancy, no matter what. This experience – and the trials to come – left them feeling alone and overwhelmed.

“I would have loved to be able to talk to some people who’ve had that experience,” says Igraine. “It just felt quite daunting at that moment, thinking, ‘Oh my goodness, what have we got ourselves into?'”

In hindsight, now more than two years down the track, she reflects, “I think those conversations in some ways are even harder because you haven’t even yet met your child and fallen in love with them, and there’s the complete unknown of what’s ahead.”

When Josiah Lim did make his way into the world, it seemed at first that all his problems in utero had resolved.

“The first five days in hospital after he was born, we thought he was going to go home. The doctors were really, really surprised,” Josh recalls.

“But then, on the fifth day, when we were ready to check out and go home, they realised his breathing wasn’t good. Then he started having seizures.”

Josiah stayed in the intensive care unit while more genetic tests were carried out.

At four weeks, Josiah was diagnosed with a rare genetic condition called PACS1 syndrome.

“He needed heart surgery during that time. They discovered he has a problem with how his eyes are formed and he was still having seizures,” says Igraine.

At four weeks, Josiah was diagnosed with a rare genetic condition called PACS1 syndrome – which results in moderate intellectual disability, mobility limitations, speech and language problems and a distinct facial appearance.

According to the Lims, there are only around 150 people in the world who have so far been diagnosed with this syndrome, which was discovered a mere seven years ago.

“The oldest person with a known diagnosis is about 21,” Josh explains. “About 20 per cent [of those diagnosed] can’t really walk. It also affects intellectual development, so whether they can read and write and talk. Then there’s seizures, which are quite common, and sleep issues. So, some of the kids don’t sleep as much and wake up during the night.”

When the Lims took Josiah home at six weeks, they were still in shock but, at the same time, elated.

“I was just so overjoyed that he was home and alive,” says Igraine. “I don’t think we had really thought too much about the future just yet. Josiah’s ridiculously cute and adorable.”

But as the first year wore on, Josh and Igraine began to feel more and more alone on their journey. The differences in Josiah’s development compared to their friends’ babies started to become more apparent.

“It’s a struggle to keep trusting God when you don’t understand why things are happening.” – Josh Lim

Fortunately, the Lims were put in touch with the parents of six Australian children also diagnosed with PACS1 – four in Sydney and two in Melbourne. Igraine also crossed paths with mums of children with special needs at the many therapy sessions she took Josiah to every week. However, they couldn’t find any parents in the same boat who also shared their Christian faith.

“I was coming into contact with parents of children with special needs who are really finding it quite tough,” explains Igraine. “Because Josh and I have definitely tried to be very positive, and we do have this amazing hope, I found a lot of these conversations kind of jarring, probably because we are seeing this situation slightly differently.”

Josh adds: “If you didn’t have that hope in a God that loves you and has a plan, I would be in the same situation too. In fact, it’s a struggle to keep trusting God when you don’t understand why things are happening or when things are frustrating, let alone being a non-believer.”

They began to ask around and search the internet for a Christian support group for families living with disability.

“We couldn’t find anything. I’m sure there must be small little things happening in Australia, but there’s nothing large scale,” says Igraine.

“We were both really surprised that this didn’t exist … So we began thinking we should do something, but it took us a while to get up the courage.”

“We thought, we are the youngest parents, we’ve only got one child, what do we know about disability?” Josh adds.

“There’s also lots of conversations where people are being real about the things they are finding hard, asking for prayer.” – Igraine Lim

But Igraine received encouragement to start such a group when she attended a talk by Ainsley Poulos, a committee member of the Anglican group Equip Women, who has a teenage son with a disability. She was also spurred on by disability researcher, advocate and parent of a daughter with special needs, Louise Gosbell (Gosbell is dean of students at Mary Andrews College in Sydney).

“We thought that we would put on an event to begin with, but with COVID, it actually made more sense to do something online. And so we started a [private] Facebook group in April this year,” says Igraine.

They named the group The 139 Collective, based on Psalm 139, particularly verse 14: “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”

The Lims were put in contact, through mutual friends, with Matt and Erica Dodd from Lakemba Anglican Church in Sydney’s south-west. Their son Noah has Down syndrome and is around the same age as Josiah. The Dodds were keen to help lead and moderate the Facebook group.

Now, just five months on, The 139 Collective has 167 members.

“We’re really surprised by how quickly it grew,” says Igraine. “We had a few contacts to begin with, but then it spread really quickly just by word of mouth.”

She adds: “I’ve definitely really appreciated being part of this community so far. It’s encouraging because it’s just families sharing their stories.

“I think everyone loves being able to share about their child, and it’s great to get a glimpse into other people’s lives who are going through similar experiences.

“But there’s also lots of conversations where people are being real about the things they are finding hard, asking for prayer for certain things and sharing articles and other resources.”

One of the key aims of the group is to provide support to families at the diagnosis stage – as the Lims wish they’d had.

“It’s a really hard period at the start when you’re diagnosed and you don’t know anyone [in a similar situation]. You don’t know what life will be like, and you have no one really to talk to you,” says Igraine.

“We just had someone join last week who is in the process of having her child diagnosed as being on the autism spectrum. She asked the group for support and it’s been so wonderful to see all the people in the group who are so willing to reach out to her and support her.”

“At times, I’ve found it hard to totally express all my weird mix of emotions – I feel such joy because I’m so thankful for Josiah, but at the same time, I have this real grief.” – Igraine Lim

Another key aim is to help churches better support families living with disability and additional needs in their congregations.

“We’re realising that each individual church, understandably, doesn’t have the resources to support a child with Down syndrome, for example, in their kid’s ministry, or the resources to know how to do keyword signing for songs or things like that,” says Igraine.

This month she and Erica Dodd were awarded $5000 from Anglican Deaconess Ministries to build a website for making resources – shared in their private Facebook group – available to churches and to others.

Igraine and Josh are keen to invite other Christian parents who have children with disabilities or special needs to join the group.

Expressing the difference this network is making in her own life, Igraine says: “At times, I’ve found it hard to totally express all my weird mix of emotions – I feel such joy because I’m so thankful for Josiah, but at the same time, I have this real grief.

“I don’t feel like I can express that to them because it might sound like I don’t love my child or that I’m not totally joyful about having him.

“I think I’ve become more comfortable, in time, with the fact that you can sit with both of those emotions – that you have some real joy and some real grief. And it doesn’t take away from my love for Josiah.”

Josh adds: “Having that connection with someone who’s gone through a similar journey, or is going through a similar journey, is extremely powerful.”

“You have all these questions or you’re struggling with doubt or whatever it is, so it’s wonderful to talk to someone who’s also had to wrestle through it and can say, ‘God is still faithful’ or ‘let me pray for you.’

“It’s an isolating experience for a lot of families living with disability because often it means they’re at home a lot and they may not have much support. So, not only are they feeling isolated physically, but also maybe relationally because they have a different parenting experience,” Josh continues.

“Having people who are on a similar journey, to be able to contact and to journey alongside, is a big opportunity. We’d love to foster that.”

For more information about The 139 Collective, visit their Facebook group here.