Johnny is seven.
On Monday Johnny was engaged and energetic. On Wednesday he was inert and exhausted. By the end of the week, his parents received his terminal diagnosis and had moved their family of seven–with children ranging in ages from one-and-a-half to ten–from Arkansas to St. Jude’s Children’s Hospital in Memphis, Tennessee. St. Jude’s offers cutting-edge experimental treatment for pontine glioma. Within days, three churches surrounded Johnny’s family: their church of ten years in Michigan, their new church in Arkansas after a recent move, and a church in Memphis that quickly “adopted” them.
Two hundred children each year across the globe are diagnosed with pontine glioma. The long-term survival rate is grim, at best. Johnny’s family is fortunate to be surrounded by the support of an army of Christians across the nation and quite literally, around the world. Johnny, his siblings and parents receive a steady flow of packages, cards and letters, email, calls, and visits from friends, loved ones, and total strangers.
In the middle of the chaos and the grief, Johnny’s family considers themselves, in many ways, to be “blessed.” Every day they meet mothers, fathers, and families torn by isolation, guilt, exhaustion, loneliness, fear, and crushing financial burdens. Many parents don’t know the comfort of a ringing phone, a care package, or gas cards slipped into their hands.
The Role of the Church
Every church in a community with a children’s hospital should consider participation in a coalition that reaches out to parents of critically and chronically ill children. If your community doesn’t have an outreach to parents of chronically, critically, and terminally ill children, consider starting one. While parents such as Johnny’s do need money and financial provisions, their hearts often ache for the simplest things: gifts of time and the freedom to create memories. Respite for “dates” with their spouse or other children. Invitations to parties and outings for siblings trapped with hospital walls. Extra arms to hold their child so they can take a much-needed nap. Someone to invest a few hours and a few dollars fixing the filter on the family pool so they can make special memories in those final months. The luxury of a manicure, pedicure, or haircut. A soul willing to sit and play games, read books, color, or just talk. The list is endless.
Where Do I Start?
Begin by calling area churches and your local children’s hospital to see what services or programs might be in place and how you might plug in. Visit the hospital and ask to speak to a social worker to learn more about the needs of families and how you might be able to coordinate an effort within your church. Help to create a network of individuals within your own church who can offer respite and assistance to families with children with special needs.
More valuable information on this topic is available in an excellent book by Jolene Philo, A Different Dream for My Child. More on Jolene’s book in our next blog posting.