Recently, Amos turned 10. Just two years earlier he went into mainstream primary school and back to SPED. Four years ago he got off the CPAP machine. Five years ago he ventured into speech. Six years ago, he got off his feeding tube and drew his first complete fish with a body, tail, eyes and mouth. It was almost 7 years since Amos ditched his assisted walking devices. And now, every day after school, the little big guy breaks into a sprint and races his big brother down the corridor.
What a journey.
Yet that knot in the belly 10 years ago still felt so close; when we first lay our eyes upon the anomalies in the prenatal charts and scans many months before he was born; the enlarged nuchal fold, the elevated risks from the tests, the reduced foetal movements compared to our first child, the decision to bring him up to term no matter what. The scenes of that pivotal moment never fading; the sudden awakening from the labour pains, dragging little Joel out of bed, the rush to the hospital, the 15-minute delivery.
Yes. From the taxi to the table and out came Amos. By the wonder of divine design, the poor kid was clamouring to get out into the world because his umbilical cord was wound tight around his neck. We received him with unspoken stoicism and trepidation. We did not smile and there was no bundle-of-joy moment. “Here he comes,” was our thought. It was surreal. A glance at the infant’s features revealed it all. Down syndrome.
It was but an instant, before the medical team whisked him away. He was tiny, floppy, blue and unbreathing. He came silently into the world, yet amid a flurry of hands intubating him, tapping at his back, his chest, doing a miniature CPR procedure to his tiny lungs. When at last, he gave a thin squeal and told us that he was very much well and alive. Then, just a year later, when he was still floppy and unable to crawl, he began his journey at Rainbow Centre.
Now 10 years on, I’ve had expectations for the little guy. It probably began at a time when he caught on phonics and started reading, probably at 5 years old or so. Then I became more expectant when he started spelling and grew to like it. And my expectations went through the roof when I learned that as far as formal education is concerned, 18 years is pretty much the end of the road for Amos.
Unless a new system falls in place by then, at 18 years old, he will be interviewed and assessed. If he is found to be suitable for employment (or sheltered-employment), he’d go on through the system; apprenticeship, internship, and so on. If he is not, he’d have to be home-bound, probably for the rest of his life.
So turning 10 is hence bittersweet. It showed us how far the little guy had come and how much time we have to get him up to shape. We’re talking about functional skills for independent living, speech, pronunciation, communication, occupational skills from cleaning up after himself to basic arithmetic, counting money and telling time. And progress isn’t always linear. Recently, we worked with him on arithmetic, and he regressed on telling time. Then there’s the behavioural traits; the stubbornness, the wilful insistence, the propensity to negotiate at every turn in order to get his way—which would probably get him nowhere even with sheltered employment. It’s a lot of work and resources, and it got me pretty anxious and stressed at times.
Those were also the times when I completely forgot that Amos was once tube-fed and now munches on a burger, or that he needed the stroller for the first 6 years of his life and now plays tag with his brother, or that I had once doubted his ability to read and write.
Having no expectations is probably an art. Not in a passive way but in a way as to prepare for the worst and hope for the best. It requires us to work past our doubts, to keep at it despite our doubts. It’s insanely tough. We were only given enough light at our feet to see the spot of ground in front of us and no farther. Yet it is enough that we may take the next step without falling into a pit.
Perhaps this goes back to having faith, to cling desperately on to it against so much of the world that tries to tear us away from it; the accolades and awards and achievements, the competition all around us; now and in the future. Insensitive remarks. Discrimination—subtle, but it’s there. Health, finances, employment. As parents, how easily we fall into the trap of trying to affirm ourselves by the achievements of our children.
It’s ironic how progress gets us wanting more. Maybe it’s about being contented but not complacent. By the ways of the world we may be discouraged, but we do not despair. We’re reminded through faith that by God’s grace, Amos has journeyed a decade.
And by the same grace he bravely takes on the next.
“It is of the Lord's mercies that we are not consumed, because His compassions fail not.”
Lamentations 3:22
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