Lim family
Tell us a bit about your family
My name is Igraine and I am married to Josh. We have two children – Josiah who was born in July 2018 and Elias who was born in January 2021. While I was pregnant with Josiah, we had significant complications come up for him from just 16 weeks gestation. At a routine ultrasound, it was found that Josiah had fluid accumulating in his chest that hindered his lungs from developing normally. As a result, he needed multiple procedures while in utero to drain the fluid and we had weekly ultrasounds for the majority of the pregnancy. There was always a question mark over whether Josiah would survive after he was born and we were even asked if we would like to abort. Obviously, we chose not to abort but we felt apprehensive for a lot of the pregnancy about the uncertainty of what lay ahead.
When Josiah was born, he miraculously did live and it looked like all of the complications with his lungs were resolved and that we would be able to take him home from the hospital just a few days after birth. However, before he was even a week old, he started having numerous other health complications. He required breathing support, heart surgery and he began having seizures. It was a really tumultuous time for Josh and I. We were new parents who had completely fallen in love with our little boy and yet news of new health challenges seemed to arise every day.
When Josiah was four weeks old, the geneticists finally pinpointed the cause of his challenges and he was diagnosed with a very rare genetic syndrome that was only discovered in 2013 called PACS1 syndrome. There are approximately 150 individuals worldwide diagnosed with the condition, with most of them being children due to the recent discovery of the syndrome. This means that we are not really sure what the future will look like for Josiah. We know that PACS1 syndrome is associated with global developmental delay and an intellectual disability but there are several unknowns for Josiah’s future. We have seen Josiah make a lot of progress in the last two years and we really pray that Josiah will one day learn to talk and walk confidently.
What are some of the joys of parenting a child with a disability?
Igraine: Josiah is an absolute delight. He has the most beautiful personality and is incredibly affectionate and warm towards people. He loves swimming and going to the ferry wharf to look at the birds. He also really loves his little brother Eli and spends a lot of time going to “check” on him when he is sleeping. We love that Josiah likes cuddles and has a very cute smile and laugh along with a cheeky personality!
Josh: I love his smile and his infectious giggle. I love seeing how enthusiastic Josiah is about little things like birds, going for walks and peanut butter sandwiches. I also love seeing how gentle and caring he is to his little brother Eli.
What are some of the challenges that you have faced while parenting a child with a disability?
Igraine: Josiah has required a lot of extra assistance to learn simple skills. We have been seeing a physio to help with his mobility since he was three months old and it has taken a lot of daily practice to help him to learn simple things like sitting unaided, crawling, getting up from the floor, and most recently to learn how to walk. He also has taken longer to learn to eat, drink from his sippy cup, and understand how to use many of his toys. We are still helping him learn to communicate his needs and he is currently non-verbal. Helping him to learn each of these things has sometimes felt like a huge time investment from Josh and I (which we are very glad to do!) but it has been a lot to juggle with the other things in our lives.
Josiah also gets overwhelmed in some situations and certain things have taken him longer to become adjusted to such as baths and noisy environments with lots of people. He does not always like being at playgrounds with other children and needs very close supervision in order to stay safe so this has affected how we socialise as a family.
Josh: I echo a lot of what Igraine has said. I think the extra needs Josiah experiences has stretched me and exposed a lot of my own selfishness and brokenness. Currently Josiah experiences seizures, sometimes in his sleep, which causes me to feel anxious. I find myself getting frustrated and angry that Josiah and our family have to experience these additional challenges, and Josiah’s extra needs have put pressure on our marriage at times. Relationships with others have been impacted as Josiah requires more attention, which has led to feeling isolated at times. I also feel sad for Josiah because sometimes I can see that he tries so hard to do things which are so easy for other kids.
How has your faith been stretched or grown on your parenting journey?
Igraine: I have learnt a lot about trusting God to watch over Josiah’s needs and development rather than trying to control everything in my own strength. When Josiah was first born, I think I felt a huge amount of pressure to do everything possible to help him fulfill his potential. Many of our doctors and therapists talked about the importance of “early intervention” and about how if we did everything possible to help Josiah in the early years of his life then he would have better future prospects. It felt like a huge amount of pressure to not “stuff up” parenting and let Josiah down. I have come to see however that this is not what God promises us in the bible. Although I still try to help Josiah with his therapy as much as possible, I also now try to remember that it is ultimately God who is watching over him and looking out for his needs. Luckily God is better at looking after Josiah than me and can cover over all of my mistakes!
Josh: I have been learning that I have so little control. I can’t control Josiah’s seizures, or whether he will learn to walk or talk. All this uncertainty has led me to cry out to God more. So I think God is teaching me to be dependent on him. The other thing I have been learning is to give up some of the idols of career and success as I have felt less able to pursue them, and instead to cling onto God.
Do you have any words of encouragement to share with other families of children with disabilities?
Igraine: Find others who can relate to your situation. We felt a little bit on our own when Josiah was young because our path seemed so different to that of many of our friends. We have really benefited from connecting with or hearing about families with similar challenges to our own. It reminds us that we are not the only people in the world who have faced these challenges and that it is possible to thrive whatever your journey.
Josh: I am still at the beginning! I would say keep praying; God wants us to be dependent on him, and He promises that He loves us and is drawing us into a deeper relationship with Him. Also, as Igraine said, I think having relationships where you can be vulnerable is really important.
How can the wider church support your family?
Igraine: We love seeing Josiah included in activities with other children his age. This is not always easy as he is not at the same spot developmentally as his peers, but we know that it helps him learn so much and it brings us joy seeing him belong.
Josh: Perhaps being accommodating to catching up at our place or at times outside of church. It is sometimes hard to interact in social settings with Josiah (like church) as he needs a fair bit of supervision and can sometimes get overwhelmed. Perhaps asking how things are going in our faith, parenting and marriage.
Where are you based?
The Hills District, Sydney
.
.
The views and opinions expressed on this site are those of the authors and do not necessarily reflect the official position of The 139 Collective. As a collective, we seek to humbly learn from each other’s experiences and remember the unity that we share in Christ even when our current viewpoints on the difficult topic of disability differ.
