The human individual, made in the image of God; not some thing but some one, a unity of spirit and matter, soul and body, capable of knowledge, self-possession, and freedom, who can enter into communion with other persons – and with God. The human person needs to live in society, which is a group of persons bound together organically by a principle of unity that goes beyond each one of them. (Catechism of the Catholic Church – Glossary – Person, Human)
A human person, this is Monica, born frail, with her trisomy-21! How do we facilitate her growth into full expression of her humanity, how do we honor her, a person… “made in the image of God”! How do we invigorate her “capability of …self-possession, and freedom” and to “live in society”?
Monica’s family is always balancing these questions. Trying to enable her, while still maintaining awareness of her personal frailties, as we would care for any of our brothers or sisters… At work engineers use a tool called FMEA (Failure Mode Effects Analysis), it asks questions…What can go wrong? How? What would happen? What can be done to mitigate the effect of the failure? When we are helping our child, disabled or not, to grow into the fullness of their being there will be risks encountered.
Monica loves to participate in church life at our local church. Singing, listening to the homilies, tidying up after mass. A few months ago, she volunteered (spontaneously, a tendency of hers) to usher at the masses, greeting people, walking the donations basket down the aisles, etc. The ushers gladly accepted her as a new member of the ministry. Wonderful! After a few weeks of training she already seems gracious and practiced in the art. But this meant family having to hang around after mass, crimping our schedules. And sometimes Monica volunteering at a different mass than we intended to go to, or a second mass! How would she get to church? Monica was unfazed. She would ride her bike! But Mom was fazed! Danger, cars, cross-walks, unforeseen circumstances!
It’s about two miles to church and there are some street crossings, and one major intersection. But the route is straightforward and apparently Monica knew it well enough. We purchased a light-colored backpack and fastened to it bright LED lights that had a flash mode. We fastened new flashing LED lights to her bike front and back. We practiced her combination lock; even using a kitchen chair as a bike and the kitchen railing as a bike rack. Monica insisting all the while she needed no such practice. Of course, she had to pay for these lights and backpack. Monica is working now, she has her own checkbook and pays her way for therapies, lessons, outings and now… bike repairs. Her maiden voyage went smooth enough. Dad watched her progress via phone GPS and knew when she had arrived at church. Then he went up and checked her bike location and locking. Some minor issues, it was locked only through the wheel, not wheel and frame; it was in a prominent, not obscure place; it was locked to a short light pole with no top, it could be lifted right off the pole! Dad found Monica and reviewed the ‘failures’ unanticipated in our informal FMEA and Monica happily continued with her ushering duties. Then after mass we saw she was delayed, we watched her GPS signal emitting from the major cross road. Another quick drive up to church found that she wanted to cross the street one way but was pushing the button for the other, she was not getting a walk signal! Dad and Monica studied the road signs and she understood, a new light dawned, another unanticipated failure mode, but compensated by growing knowledge!
On the ride home, she hit a curb and fell. “I’m tough, I can do it!” she said to herself (later reported) and she picked up the bike and continued. But now the wheel needed alignment and the brakes rubbed. The condition of her brakes was unknown to us upon her next voyage to church. We were unaware of the mishap. After mass she called on her phone “My wheel is stuck!” But a minute later, “I got it. I’m coming home!” She arrived rosy-red from exertion, but smiling broadly and satisfied…and with dirty hands. “Look at me!” she said. “I had to pull on the brakes. The wheel was stuck!” A few days later, after a trip to the bike shop, a wheel alignment, a mechanical once over and a bill for $20, paid by Monica, and the bike was fine again.
Monica, “a unity of spirit and matter, soul and body, capable of knowledge, self-possession, and freedom, who can enter into communion with other persons – and with God.”
Monica, our children, our family. Let there be light from light.