OUR THIRD CHILD, Liam, was born one early and beautiful Monday morning. Though the attending doctors sent him to the neonatal intensive care unit for brief observation due to respiratory distress, the hospital staff was not concerned about his health or development, and neither were we.
We were ready with the camera, the Facebook update, and the jubilant fanfare of welcoming our new son into the world. But a few hours later, all of that changed. The doctors pointed out that Liam had physical signs suggesting he had trisomy 21, otherwise known as Down syndrome.
The birth of your child is a day of celebration — whether it's your first or fourth, it never gets old. With each one, you just know more of what to expect. But we grieved terribly that day for a shattered reality, the dreams we had for our family, and our hopes for our son.
As others tried to sympathize, we were told that we were heroes, and that we must have special gifts and status in heaven for God to send us this challenge. We certainly didn't see ourselves that way. People often project their own fears, insecurities, and challenges onto us as a family. We don't fault them for this; partly because before Liam, we too were ignorant of the world of disability and special needs.
Now, when people ask us what it's like to have a child with special needs and disabilities, it's hard to know how to satisfactorily answer that question. In some respects, we think of parenting our son with a disability simply as parenting. With Liam, we do have our own set of challenges, yet we also have challenges with our other two typically developing children. Sometimes, we forget that Liam has a disability or is not typical; parenting is hard in general.
In some respects, we think of parenting our son with a disability simply as parenting.
Many Christians have adopted into their theology that Liam's disability points to fallen-ness and reveals the effects of sin. People want to make us feel better by telling us that God will fix it. We once had a well-meaning person at a church tell us that with prayer, God can do all things, including healing Liam from Down syndrome. Liam is a child with a disability who has intellectual and physical delays and challenges. People often think that Liam reflects the broken world we live in. And one day, when Jesus makes all things right, Liam will also be made right.
But over the past three years, it's been the people in our lives, who are content to just listen without the need to fix us, inspire us, or affirm us, who have helped us feel loved, known, and encouraged as parents.
Liam is actually a survivor, as the vast majority of children with Down syndrome are not born, either because the mother's body rejects the fetus in a miscarriage, or because parents test for the chromosomal abnormality and choose to abort the pregnancy.
Liam is actually a survivor, as the vast majority of children with Down syndrome are not born.
If there is one thing that God has done through Liam, it is rewriting the script of our lives. We now see that we were unaware of all the expectations we had for our first two children. We had unspoken but specific images of our future and their future; with good parenting, God's blessing, and perhaps a little luck, we fully expected to walk the script we had written for our lives. What Liam has taught (and continues to teach) us is that life — particularly the life of faith — is not about that. Like Abram in Genesis 12, who was challenged to leave his home without much of a script, an invitation from God is to enter into a journey of curiosity, detours, unexpected joys, and redeemable pain.
Invitations to see beauty are blessings, and they regularly force us to reject the dominant narratives the world tells about disability. Liam causes us to see beauty in places we never thought to look before. In our Armenian and Japanese cultures, it can be challenging to see beauty in disability. If anything, our cultural narrative tells us that Liam is all that is broken in our world, and that these types of "imperfections" can bring shame to our family.
Liam causes us to see beauty in places we never thought to look before.
A few months into Liam's life, a friend visiting from Armenia commented to us that in Armenia, disappointment generally overwhelms many parents in our position. Shame that they now have a child who is "less than perfect" drives these parents into depression and isolation from their communities. We empathized with her words and wondered if we could be honest about Liam's diagnosis outside our immediate family. It took six months before we could publicly share about his diagnosis via blogging and Facebook. From the outset, we struggled with having a family that was now visibly less perfect.
As a family, we had very few friends who had disabilities or were parents of children with disabilities, so we had no other narrative to challenge that for us. Yet what Liam has done has challenged what we believe about God in creating someone like him.
Is Liam, who has an extra chromosome 21 in every cell of his body, created in the image of God? The answer is yes, and because of this truth, Liam therefore reflects beauty in creation. Like our other two children, God also wonderfully knit Liam in his mother's womb.
Is Liam, who has an extra chromosome 21 in every cell of his body, created in the image of God?
Perhaps the problem of our broken world is not so much reflected in Liam's disability, but in how we don't value someone like Liam.
We live in a world where we value, judge, honor, and give worth to those with high IQs or a "perfect" body. In our present world, Liam is easily dismissed. His disability suggests that he is more of a burden rather than someone adding value to our world. Yet, in the kingdom of God, those aren't the values that bring worth to a person. Liam reflects brokenness and sin in our world inasmuch as he exposes the hostility of this world toward humans who bear the image of God, and why this world is broken and in desperate need of redemption.
Liam has led us to trust God day by day rather than worry about how the script of our future will be written — we're easily overwhelmed when we think about Liam as an 18-year-old young adult. But God focuses our attention on embracing the present moments and being faithful as parents to help a young toddler learn to manage his world. As believers, we know that when Jesus returns and makes all things new again, all of our bodies will be transformed — including Liam's. This may not actually mean that God will take away his Down syndrome, but perhaps in the new creation, Liam will live fully as who he is, in a world that fully accepts, honors, and glorifies him.
As believers, we know that when Jesus returns and makes all things new again, all of our bodies will be transformed — including Liam's.
It is beautiful seeing Liam be a blessing to a larger community of people. He regularly ministers to others through his charming smile and affectionate personality. We often hear people tell us that Liam's presence has relieved some anxiety or sadness they were experiencing in the moment. We have seen God grow the hearts of children, teenagers, and adults to embrace and appreciate Liam's joyful presence, and to inspire many others to care for those with disabilities.
Rather than feeling sorry for us or trying to sympathize with us because of our challenges with Liam, we hope more people will listen to Liam and all the men, women, and children with disabilities (whether physical or mental). Their courage in managing a world hostile to them, their grace and joy in embracing life, and the places that communicate their value and worth are needed prescriptions for many of us who turn to fear, anxiety, and unhealthy envy for what we don't have.
Just the other day, our daughter, Layla, 11, and son, Marco, 8, were playing with Liam. They were engaging their imaginations as they built a fort. We loved hearing their giggles, arguments, laughter, and grunts. Liam's brother and sister see him for who he is — someone they love and want to include in their imaginary world. We are grateful that God sent us Liam, because we cannot and will not imagine our lives any differently.