A divine appointment with Down syndrome

The call came at night. The results of the amniocentesis confirmed a 99.99 percent chance that the child I was carrying, our second, would have Down syndrome. My husband and I, each holding a phone to our ear, looked into each other’s eyes as we tried to process the information the doctor had just given us. Down syndrome – what did that mean?

Something was going to die that night: either it would be the baby girl that I was carrying, or it would be our dream of serving as overseas Christian workers.

In that moment of decision, the years of preparation for mission work flashed before my mind’s eye: four years of seminary training for both of us; five years serving among an unreached people group. How could we have so missed hearing the Lord’s call that he would now pull us off the field like this? Was abortion perhaps an option in our case?

And then my brain registered another voice speaking, but it was not the doctor’s voice. This voice spoke to my spirit, my brain making full sense of the words: Honour him, and he will honour you. Though I didn’t know if this was a verse from Scripture, I knew in my spirit beyond any doubt that there was only one choice that could come anywhere near to honouring the God of all life, and that choice was life.

Fortifying a weak theology of suffering

Though I was unaware of it, my personal theology at the time was that if, to the best of my ability, I did everything “right,” (that is, in line with what I perceived was God’s will), then God would protect me from “bad” things happening as evidence of his approval.

So here we were, serving among an unreached people group at the uttermost ends of the earth in line with Jesus’ commission in Acts 1:8.  How could we not be in line with the Lord’s will? What’s more, before leaving for Indonesia, I’d spent four years getting my MDiv after I’d become a Christian in college through the ministries of InterVarsity Christian Fellowship.

This “crisis” led to some pretty hard feelings towards God. Like Job, I felt betrayed.

When it came to choices about what I was going to do with my life, I had consistently chosen to act for God and his kingdom. This “crisis” led to some pretty hard feelings towards God. Like Job, I felt betrayed. What had we done to deserve this?

Thankfully, unlike with Job, God was not silent during this time of confusion. In my living room where I sat perched every day on a borrowed sofa, facing an empty wing chair, I perceived the Lord speaking to my challenge from Psalm 23:6. “Goodness? How do you see it, Bonnie?”

I heard the words spoken emphatically in my mind, “It is because I accept you as my disciple, Bonnie, that I have allowed this child to come to you the way she is. There are many things you don’t understand about my kingdom. Learn from her!”

And in this way, the Lord broke through to my understanding. The Lord was not pulling us off the field by giving us a child with special needs, as I had assumed. Rather, the Lord was deepening our call.

Another word for “weakness” could be “brokenness,” and in his book Brokenness: How God Redeems Pain and Suffering, Lon Solomon says, “Brokenness is not an optional experience for the person who desires God to use them in a mighty way.  … [It] has been a critical part of the spiritual preparation process for every man and woman whose life God has ever used.”

My first steps in this direction required that God expose and dismantle the radical internal commitment to self-sufficiency and pride that lay beneath the surface of my theological training. Four years in seminary had done nothing to dismantle this. It would take a special child to do that.

On 10 December 1999, our daughter, Anna Joy, was born. She was a four-pound, one-month premature baby girl with Down syndrome. She had a heart murmur and a total block between her stomach and intestines that had to be surgically corrected on the third day after she was born.

The burning question

Within two months of Anna’s birth, we felt the first ripple of a breeze blowing in.

We received word from our teammates that a new family had arrived on the field who had a seven-year-old daughter with Down syndrome and who was enrolled in the kindergarten class at the Christian international school in our city. Wow! A missionary family had the courage to take a child with a cognitive disability to a developing country! What’s more, this child was enrolled in a regular school! New possibilities began forming: If they could do it, why couldn’t we?

To this day, though I have tried to find her, I do not know who this lady was.

Within the week, the call came: “Hello, you don’t know me, but I read your letter in our church bulletin announcing the birth of your daughter, Anna Joy. My name is Barbara, and I’m a social worker, and for the last 20 years I have worked as a parent educator for the Montgomery County Social Services Department.

“I have worked with many children like Anna and their parents, and have seen how, with early intervention, we are able to help move these children further along in their development than if there were no intervention. But, after 20 years serving as a parent educator, I have come to the conclusion that the bottom line for the success of these children in life is good parenting skills.”

My heart skipped a beat.

To make sure that I had understood correctly, I repeated back to Barbara, word for word, everything that she had just said, turning her last statement into a question, “And the bottom line for the success of these children in life is good parenting skills?”

The voice on the phone said simply, “Yes, that’s right—good parenting skills.” And that was the end of the conversation.

To this day, though I have tried to find her, I do not know who this lady was. She was from a supporting church and felt moved to call us to give her expert advice as a social worker. Her input spoke directly to my burning question: her call was the voice of the Lord to me.

Green light! Wait?

I knew immediately in my spirit that this was the last “green light” from the Lord that we had been waiting for. If good parenting skills and not necessarily the training and resources of experts were mostly what was needed for Anna’s success in life, then we could do that in Indonesia just as well as in America.

Rejoicing welled up in my heart. My husband also recognised the Lord was sending us back to Indonesia. And because the Lord was sending us back, we could have confidence he would provide whatever we needed (John 14:13–14).

One month to the day of being off medication, we were on a plane headed back to Indonesia. Anna Joy was 6 months old, and our older daughter, Bethany, had just turned 4.

Evidence of God’s grace in weakness

At last, we were “home.” And though I was fragile, I perceived something new pushing up through the broken pieces of my life, and it had to do with the way I related with Indonesians. The invisible barrier of being a wealthy, white Westerner that plagued every relationship I had with my poorer Indonesian neighbours suddenly felt reduced. Of course, in my neighbours’ eyes, I was still wealthy, white and foreign, but on the inside, I was changed.

The education venture

Fast forwarding two years, Anna was accepted into the preschool program of the missionary-affiliated international Christian school in our city. However, by the end of first grade, the school informed us that they did not have the expertise or resources to continue to teach Anna in higher grades.

The school administrators suggested that “If you, Bonnie, want to teach Anna yourself and be her aide, we can provide a desk for you in the back of the classroom. I couldn’t appreciate it at the time, but, in essence, the school was offering an innovative partnership: a parent-defined and parent-led mixed model of inclusion/homeschooling, in which Anna participated in the non-academic life of the class, but I, as the parent, was responsible for Anna’s academic education.

A kingdom catalyst

What I didn’t realise at the time was that my training to become a Special Ed teacher-mum had begun. Training was on-the-job, starting with my own child. From second grade, I was in the classroom every day with Anna, facilitating her every endeavour to grow socially and academically.

Not only did I find I loved this job, I also began to see how interacting with Anna pulled good things out of her classmates. These children were learning how to extend grace to someone who was different from them and who sometimes did things they didn’t understand. Here are a couple of vignettes:

One day in second grade, Anna refused to play dodgeball during P.E., so Kirsti, a classmate from Taiwan, marched over to me and demanded, “Why isn’t Anna playing the game?”

One day in second grade, Anna refused to play dodgeball during P.E., so Kirsti, a classmate from Taiwan, marched over to me and demanded, “Why isn’t Anna playing the game?”

I explained to Kirsti, “Anna’s favourite colour is red, and only one of the five balls out there is red. Anna would like to throw the red ball, but she can’t get it because the game is moving too fast.”

I saw a twinkle appear in Kirsti’s eyes as understanding dawned. Without another word, Kirsti dashed away and made a beeline for the red ball. She captured it and went straight over to Anna, who threw it.

This pattern of Kirsti getting the red ball for Anna continued for the duration of the game. My heart soared to see this breakthrough in relationship – a Taiwanese second-grader stepping into acceptance and serving so the disadvantaged might be included.

At recess in fourth grade, I saw three fourth-grade boys, two Americans and a Korean, invite Anna to play a game of tag. I immediately suspected the worst, that these boys were looking for a laugh at Anna’s expense, but I waited to see what they were up to before I intervened.

The game was nothing like what I feared! These boys slowed the game down and found their fun in allowing Anna to catch them whenever she was “it.” The kindness and gentleness these boys displayed towards one weaker than themselves brought joy to my heart.

All these grace-filled interactions could not have happened without proactively educating Anna’s classmates. That job fell to me as Anna’s teacher and advocate.

Every school year starting in kindergarten, I taught Anna’s class a devotion using Aesop’s fable, The Tortoise and the Hare. After presenting it, I introduced the concept from Genesis that it pleased God to create creatures both fast and slow. From the animal kingdom, I moved on to the human family and made the same point – some people are fast and some are slow by God’s design. God is pleased with both.

It wasn’t just in the expat community that Anna had impact. Indonesians were moved as well.

Disability in Mission: The Church’s Hidden Treasure by David C. Deuel, (Paperback, 2019). Available at Koorong

Anna was not able to continue at the international school beyond age eight; it wasn’t working for us to be in the classroom anymore. So, we moved to an Indonesian school that used a Montessori-type teaching method.

The founder, Ms Vivi, also wanted to pioneer a Special Ed track as part of her school, and so she personally invited Anna to join. When I attended my first parent-teacher conference, Ms Vivi sat in while Anna’s teacher went through her portfolio of achievements.

But Ms Vivi wasn’t able to stay quiet for long. I could tell she had something important to say because she had tears in her eyes.

“Mrs Bonnie,” she broke in, “we need Anna at our school. Indonesian parents have no hope for children with disabilities, but when they see Anna, that she can read and write, that she loves God and interacts well socially, then for the first time they have a picture of what might be possible for their child.”

Ms Vivi named a silent reality for Indonesian parents raising a disabled child – they have no hope. But when they looked at Anna, they were inspired to believe that their child could be more than what was being projected onto them.

In Anna, they saw someone who was overcoming her limitations with dignity and grace, and the humanity contained beneath Anna’s Down syndrome broke through to them. That day, I realised Anna, indeed, had a high calling on her life, a call to carry Down syndrome with dignity and grace.