The package arrived at the hospital, neatly wrapped in brown paper, our names carefully printed in black ink. The return address was unfamiliar, but we had become accustomed to receiving gifts from strangers; word about our child’s illness and hospitalization had traveled quickly. We were grateful for the kindness of the many new “friends” who wrote cards and sent gifts; these were welcome distractions during the long and uncertain days.

As I opened the box, I discovered booklets, brochures and treats. I read the accompanying letter and learned that a well-meaning neighbor had contacted the sender after finding her name  on the internet.  The woman who sent the package had a son who shared the same rare diagnosis as our child. She shared her child’s experiences and also offered resources and advice on alternative treatments and cutting-edge therapies.

And that’s when I got nervous.

Much of the advice she gave seemed contrary to what our neurologist had told us. When Dr. Bass was on rounds that evening, I showed her the packet.  She leafed through the information and sighed.  She then gave me my first lesson in discernment as the mom of a child with special needs:”You need to be careful,” she said. “Don’t believe everything you read and hear. There are going to be a lot of people who tell you what to do from here on out, ” she continued, ” but not everything is going to be the right thing.”

I wish I could tell you that the unsolicited advice about my daughter’s medical treatment ended with this lovingly sent, and well-intentioned package. It didn’t.

We also got advice about the spiritual nature of our daughter’s illness from a variety of sources. While most of this was supportive and prayerful, we also received comments that, without proper discernment, could have shattered our faith. For example, one person told us that any concern about our daughter’s health during her life had opened a door for her disease to enter; our worry (sin) had therefore caused her stroke. Others questioned how we could believe in a God who would “do that” to our daughter.

During my years as an educational consultant, I have seen parents spend thousands of dollars on treatments that are well-marketed, but poorly researched. Some observers might call this wasteful or futile, but I understand it. A certain nervous desperation lurks in the minds and hearts of many parents who are raising kids with special needs. As parents journey through diagnosis and treatment, they form very close, trusting relationships with doctors and therapists. These parents thirst for the kind of decisive leadership that these experts can offer. Unfortunately, in this imperfect world, “experts” can sometimes take advantage of this desire for leadership. Consider the statements about leadership and discernment in this 30-second clip from “The American President.”

http://www.youtube.com/watch?v=YsW_P9KQtuU

Each time I watch this, I’m reminded of the great responsibility that I have –that we all have–as followers of Christ. We’re in a unique leadership position as we reach out to families affected by disabilities. Many of them are thirsty for the kind of leadership that offers the “real thing.” And we’ve got it. We don’t have to serve sand; we’ve got Living Water.

So, as I determine the resources and information I select and recommend, and as I plan my own words and actions, I need to ask myself, “What am I serving to these families? Sand or Water?” I pray that I will know the difference.

I hope your cup overflows today!
Katie