Our younger daughter is an obstetrician and is full of stories about exciting deliveries, crying newborns, and anxious parents. As humans, we have our ideals and expectations. New parents expect an uneventful nine months of pregnancy, a smooth and quick delivery, then to bring home an adorable baby, who will then grow up to be a sweet and loving child.
For our eldest, however, things could not have been farther away from that. She was born prematurely at 27 weeks, weighing less than 1kg. In the past 37 years, the most difficult parts are not the ‘major’ events – not the three stormy months she spent in the ICU or her major fit. The most difficult parts are the everyday. The fit has affected her learning, development, speech, and motor functions. Like a toddler, she needs help with the simplest of tasks, from dressing to feeding to brushing her teeth. And like a toddler, she has mood swings and tantrums. But unlike a toddler, she has remained and will remain this way. It is not the flu that can be treated or a phase that she can grow out of. It is not about recovery or survivorship, but about acceptance and sustaining. This is our daughter, and this has become our reality.
For the longest time, we wondered about the why. Why would God allow this to happen? We were thrown into anger, bitterness, and disappointment. It has been a long road back to reconciliation and complete surrender. Still, it is not easy. There is the struggle of every day and the fear of tomorrow. Every day we ask for His strength. We remind ourselves daily that God knows more than we do and that everything He does (or rather, doesn’t do) is because of His love for us, and for His ultimate glory. We remind ourselves that He alone knows what He has prepared and that His provisions are sufficient.
The words ‘disabled’ or ‘impaired’ are curious words. They imply that something has been taken away from the person, and they are somehow less than – made less ‘able’, less ‘functional’, less whole, and less healthy. To the world, it may seem that a lot has been taken away from us and from our daughter – her ability to take care of herself, go to school, get a degree, work… the list goes on. We have come to see that, on the contrary, we have been given so much more. She is kind-hearted, affectionate, and genuine. She finds joy in the simplest of things. She has an infectious laugh and the brightest smile. Her world is not the same as ours, but her ability to appreciate the world is by no means inferior. She is her whole, complete self. She is truly fearfully and wonderfully made, by a God who created her in his image. She is not a mistake, not sick, or imperfect.
There are people with true ‘disabilities’ in the world – true blindness and brokenness. We live in a broken world, and the only hope is in Christ – that He alone can make us whole and new again.