Metachromatic leukodystrophy (MLD). Remember that name. It’s a rare genetic disease that gradually destroys the body’s nervous system. It’s a terminal disease.
Fred and his wife, Emy, are as good as they come. They’ve been dear friends of mine for 20-something years. Fred’s been a dairy and row-crop farmer, entrepreneur and crop consultant. Emy’s been the ramrod of the outfit, junior high teacher and mother extraordinaire. They’re southern Idaho natives who have always counted themselves lucky to have settled in their home country to farm and raise their family.
Hannah, Jack, Sam, Rebekah, Ryan, Rachel. Remember those names. They are the names of Fred and Emy’s six children.
Fred, by nature, is a happy person. I believe I’d even classify him as jolly. I ran into him at a Farm Bureau meeting in early November. As we discussed the relevant topics of the evening, the conversation naturally turned to the impending holiday and Christmas season. Fred’s normal jocularity took a slight turn southward toward the melancholy border.
Though the sparkle never left his eye, the timbre in his voice changed as he declared that he usually doesn’t really enjoy Christmas. Though I was well aware of the underlying reasons, he explained that Christmas is a time to be surrounded by your family. Fred and Emy mostly just miss their family at Christmas.
And here’s where the telling of the story gets tough. Over a 23-year period, Fred and Emy shepherded their little flock of a family into and through the trials of what, at times, probably seemed like a cruel and unfair life. Over that two-decade period, five of their six children passed away, victims of a crippling disease that yielded little mercy to its victims. There is no cure for MLD. The symptoms can be treated, but eventually victims’ abilities deteriorate to the point where they ultimately succumb to the disease.
I have neither the heart nor the ability to accurately describe the pain and joy these two stalwart farm parents and their son Jack traversed on that journey through life and death with their children and siblings. Because that’s what it was: an actual journey through an often joyful, yet painful life – times five.
My feeble attempts to tell their story have always fallen far short of the gravitas the narrative deserves. Like the waters of a high-desert creek in late September, the language required to accurately depict this family’s struggles seem to weaken, eventually fading into the dry ground, unable to reach those of us who desperately long to empathize with them.
After years of not knowing what to say in weak efforts to console my friends, I was finally granted an epiphany of sorts. Thankfully, they are surrounded by a community of loving people who are much better equipped for that task than I am. Through the years, the outpouring of genuine compassion from the people of tiny Declo, Idaho, has buoyed the heavy burden of the struggling family.
The most poignant awareness came to me following my recent conversation with Fred. Our discussion, of course, went a little deeper than Fred’s pronouncement of his sometimes-partial disdain for the Christmas season. Through Fred’s pithy wisdom and the couple’s kind-hearted dedication to brightening the world around them, I came to grasp just a tiny bit of the magic that has not only carried them through times of heartache but allowed them to flip the script on sorrow.
Their devoted service to their children is mirrored in the same sincere service they offer their friends and community. Through their example of stalwart service and selfless, angelic ministry, they have lifted everyone around them.
But there’s something more. Fred and Emy have found the true miracle of the king whose birth we celebrate at the close of every year. Neither His humble birth nor the marvelous events surrounding it were the culmination of the miracle. His birth merely opened the door for the incomprehensible sacrifice that allows for every one of us to be free of the self-imposed bonds of our mistakes and fears and even the very chains of death itself.
May we all remember His name and His sacrifice and follow the light carried by those like Fred, Emy and Jack.
Merry Christmas.
