She cradled his small, crooked frame in her arms, an easy embrace suggesting that this was a familiar posture for the two of them. Nine year old A. is severely physically and mentally handicapped, unable to communicate except for nondescript sounds. “But he knows our touch and voices,” V. said, smiling.
“The doctors kept pressuring me to abort him, and but thankfully there was one doctor who supported my decision to have him—that made going to the hospital for check-ups a little easier.” V. told her story with no trace of self-pity; indeed, there was the familiar hint of humor I have begun to recognize as part of a Bosnian’s cloak of resilience—a gritty toughness needed to persevere through daily difficulties.
A.’s birth was a difficult one, born with part of his brain exposed, a cleft palate, and other physical deformities. The doctors encouraged V. not to see A. for forty days because they were convinced he would shortly die and she was very weak from the birth. M., her husband, phoned in daily updates of A.’s condition. “He’s still alive!” he would report to her.
After twenty days, V. had recovered sufficiently to demand to see her son, keeping vigil in a plastic chair beside his bed. A. did not die, and M. and V. finally took him home. Admitting they had no idea how to care for a severely disabled child, they determined their best course of action was to rely on V.’s maternal instincts.
When A. was six months old, water began collecting in his brain, so the doctors put in a shunt. This resulted in continuous seizures—sometimes 50-100 a day. Now, A. takes a medication that helps control his seizures, and as it is the last option available for his condition, they hope it will remain effective. A. has difficulty sleeping; often, in order to help calm his anxiousness, either V. or M. will sit up with him during the night. As soon as he is held, he grows peaceful. “At first I felt angry with God because of how hard everything was, but now I feel His strength everyday, ” V. said.
I kept looking at A.’s shriveled body as I listened to their story—his pupils were in a constant state of motion, his eyes rolling up to the sky. There was no shortage of love in the room—I could see it in the way V. cradled her son, softly caressing his face, or the way his father came home and kissed the top of his head. I felt an overpowering wave of sadness and compassion surge up in me, and a momentary desire to flee the room possessed me so that I could privately vent my sudden grief over the state of this little boy.
Nine years after A.’s birth, the only easier thing about their situation is the familiarity with the hardness. There are few services or resources for the disabled in Bosnia, and therefore this family, like many other families, are pretty much on their own. Because of this, sometimes one or occasionally even both parents will abandon a disabled child. M., who pastors a small church, is attempting to creatively combat the constant financial struggle Bosnian pastors face by opening up his own coffee shop. In light of his never-ending workload—caring for his family, his church, and opening a new business—I find his irrepressible humor and graciousness toward me hard to comprehend.
Later, I was left by myself in the room with A. He started to get restless, so I went over and sat next to him, and began rubbing his back, feeling his bent spine under my fingers. His little broken body testifies that things are not as they should be. But his parents’ loving care of him, despite their lack of resources, speaks of hope—a hope that demonstrates God’s tenacious mercy for this broken world. This same tenacious mercy grabbed Lot and his dithering family by the hands and pulled them out of a doomed Sodom, and is now exhibited in these faithful Christians in Bosnia. Despite what their eyes see, their lives point toward their lived belief that someday God’s realized kingdom will banish the grief and sickness of our present world. As an outsider entering into these difficult stories, I believe that this tenacious mercy will continue to daily sustain them, that it will not abandon them to despair or hopelessness, because God is the God who sees.