|Photo image courtesy of Ambro via freedigitalphotos.net|
“More, more,” they say.
I have God’s more-than-enough,
More joy in one ordinary day
At day’s end I’m ready for sound sleep,
For you, God, have put my life back together.
In fact, some of the ordinary things that parents raising a child with special needs or chronic illness may find delightfully extraordinary (at least at times) include:
- Personal pampering -- While friends cannot fathom not being able to get to the salon for their cut and color or this week's manicure, we parents often subjugate our own comfort to manage that of our children. My beautician is a saint for all of the times over the years that I have had to reschedule or cancel appointments out of necessity. Those luxuries of flawless nails, massaged muscles, and perfectly coiffed hair are enjoyed far less frequently than they once were, but far more treasured.
- A neighborhood babysitter -- It is hard enough trying to find a good sitter when you have typical children. Add special needs or disabilities to the mix, and your options become significantly diminished. In our family's history, we had a number of would-be sitters who could never get past their fear of our son's bleeding disorder. Then there were the sitters who, after getting over the hemophilia hurdle, would never return because our daughter, who had yet to be diagnosed with Asperger's, was such a handful. Now imagine families we serve who have children that are tube fed or need diapering beyond their toddler years.
- Dinner out -- Of course, if you can't find a babysitter, it becomes difficult to get out to dinner together as a couple. Think taking the family out for dinner might be a good second option? Well, if your child with sensory processing issues can't handle the noise, the smells, the crowds in a restaurant, dinner out might actually be more like torture. If your child is wheelchair bound, lugging everything and everyone out of the house after a long day might seem like too much work. Something so ordinary to others can become a real luxury for families like us.
- Church -- I could write on this topic alone. Churches can be filled with loud sounds, strange smells, and unusual lighting. A well-attended church definitely has crowds. All of these things can be triggers that put our kids over the edge. Add to that the fact that some stringent expectations are often heaped on the faithful. Silent, compliant behavior is typically implied. More than anywhere else in society, a poorly behaved child is assumed by fellow church-goers to be a poorly parented child. Sunday school is rarely, if ever, equipped to handle a medically fragile child. With difficulties like these, is it any wonder that the participation rate in worship is exponentially lower for families like ours?
- Disposable income -- Medical bills add up, plain and simple. Even if a child has a diagnosis that is covered in part by Medicaid, the ancillary expenses mount. All of the money spent on gas to and from clinics, therapists, and hospitals eat away at the family finances. And if a family wants to explore alternative therapies for a child, those costs are not likely to be covered by any sort of insurance. While there are families who enjoy affluence in spite of special needs, the vast majority feel the incredible pressures of extra financial demands from special needs. That nicer car or splurge vacation that many other families enjoy tends to more frequently elude families like ours.
PRAY: Father, thank You for making the ordinary extraordinary when we allow You to refocus our priorities.
~ Barb Dittrich