Dye family
Tell us a bit about your family
We are Steve and Bec and we have four children - Callie (born 2009), Josh (born 2011), Jac (born 2013) and Amy Jo (born 2016). We live in regional NSW and are part of the Trinity Church, Tamworth.
Tell us a little bit more about your daughter
Our youngest child, Amy Jo has had quite a journey in her short five years having SWAN as a label until just recently. SWAN is an acronym for ‘Syndrome Without A Name.’ Amy Jo was born at 35 weeks and spent five weeks in NICU due to problems with breathing, swallowing and producing stools.
Upon leaving hospital, whilst her oxygen levels were much more reliable, her problems with swallowing and a ‘broken digestive system’ turned into an eighteen-month battle where, unless asleep, Amy Jo would be writhing and screaming in pain.
Our journey began to include 12 hour round trips to Sydney to see specialists. No one could explain what was causing the feeding issues or the severe and chronic constipation. Two surgeries ruled out a malformation of Amy Jo’s bowel and we were finally prescribed a medication that allowed Amy Jo to produce daily stools. Life for our now almost two-year-old began to resemble that of any other child her age.
Except this resemblance was short lived. Amy Jo was not meeting her milestones; she was still choking at most meals, and we became aware that her tongue was making very peculiar movements; her body would writhe in pain; and her lower limbs began to swell and discolour causing loss of movement for days, weeks or months. There was no discernible pattern or solution. Our “normal” became endless rounds of doctors, rheumatologists, neurologists, geneticists, paediatricians, and allied health teams.
It is with thankful hearts that this year, we finally had enough puzzle pieces to get a diagnosis, and we thank God daily for the way He has sustained us. Amy Joanna has an unusual form of cerebral palsy that causes her body to constantly change in tone. This impacts every muscle in her body. This constantly changing tone is called dystonia and it has no cure and is anticipated to progress for the next five years. She has also been diagnosed with verbal dyspraxia which is a cousin of dyslexia causing mismatched messages from the brain to her mouth impacting speech and eating.
For us, having a diagnosis has helped us to help Amy Jo understand who she is and provides a framework by which we can work on her current needs and anticipate potential future hurdles.
What are some of the joys of parenting a child with a disability?
We firmly believe that EVERY child is created perfectly in God’s image and designed for his glory. Amy Jo has brought tremendous joy to our family. She is the first one to laugh, is quick to encourage others and shows such love for God and His world. It is a delight watching her engage in therapy, play, church, and preschool with an infectious enthusiasm for life.
What are some of the challenges of parenting a child with a disability?
Having a child with significant and ongoing needs has been challenging. It is a constant juggling act to find the time to be intentional with parenting all of our children whilst doing school drop offs, getting to therapy appointments, keeping up with the washing, caring for the older generations, etc. It has been exhausting and there have been many seasons where Bec has been plagued with doubt about how to best support Amy Jo. A SWAN child has meant lots of specialists questioning our parenting, suggestions of rare diseases and the invisible yet constant presence of the diagnostic words ‘progressive,’ ‘degenerative’ and ‘life limiting.’
How has your faith been stretched or grown by your parenting journey?
We have both grown in faith on this journey. For Steve, he has become proficient at finding time in his diary for quiet time. He has connected with a group of men at our church who have listened, mentored, and prayed for our family with discipline and love - this has been an amazing testimony to both of us.
For Bec, I feel that I have had stripped away all the things that distracted me from having my identity purely in Jesus. I love working, being creative and spending time with friends and whilst none of these things are bad, God pared all these things back which has reminded me again and again to depend on him in a new and deep way.
Do you have any words of encouragement to share with other families of children with disabilities?
Yes! It is easy to wonder what God is doing and to doubt his sovereignty. Reading John 9:1-3, we see a man who was blind from birth. The disciples want to know who is to blame for this blindness. Is it his parents? Is it his sin? NO! Jesus tells his disciples that he is blind so that the works of God might be displayed in him. Our daughter is perfectly formed to display the works of God to others. This gives us such hope and joy and helps us to fix our eyes on Jesus.
Every child is PERFECTLY formed to display the works of God to others - He is a perfect God; He makes no mistakes.
How can the wider church support your family?
The wider church can support families with children who have disabilities in much the same ways that we support those who are sick. Meals are a wonderful gift, as is time to sit and listen. There have been many days when an SMS checking in or a card in the mailbox has given strength to continue to trust in God’s provision. We really appreciate when our church specifically checks in on Amy Jo and her needs and on how we are doing in our marriage and as parents.
Where are you based?
Tamworth, NSW
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.
