We all want a journey that is safe and predictable. A road that seems well travelled and easy to navigate. No sheer cliffs or harrowing turns. Sounds like Interstate 10 here in Florida, yet it is one of the most boring roads to travel. The great missionary, David Livingstone said…
“If you have men who will only come if they know there is a good road, I don’t want them. I want men who will come if there is no road at all.”
That sounds like a dangerous calling. A calling to a road that can’t be tamed or managed alone. A calling to journey on a road that doesn’t even exist. But in journeying on that road we are called to walk by faith and not by sight. To place our lives into the hands of the one who holds all of life.
It’s hard to describe where we are on this road or what our road looks like. At times we feel that we can see clearly and at other times like we are traveling in a thick fog praying we aren’t near the edge of the cliff.
Our current curve in the road was discovered about four months ago – right around the time we welcomed our fourth son, Trent Isaac into the world. Still jubilantly celebrating new life, in a matter a few days, the celebration turned to fear. Our third son, Cole had been complaining of leg pain but nothing could be discovered. Then after an injury and a more specific location (his right leg) we went in for x-rays. You know things are serious when you get a phone call from the pediatrician the next morning. “I’m not a specialist” he began, “but I believe I’m seeing what is called Legg Calve Perthes Disease.” A rare and incurable childhood disease affecting only a handful of kids out of a hundred thousand. “You’ll want to see a specialist”, he added.
The “specialist” we first sought out was a standard go-to… the internet. There began our journey into information. In short, Perthes is a disease that cuts off blood flow to the femoral head (a form of avascular necrosis) resulting in the bone shrinking as it dies in the hip joint. It is unknown what causes this and to date there is no cure.
Armed with limited knowledge, we learned there are no pediatric orthopedic specialists in Tallahassee (only a doctor that travels over from Pensacola twice a month). We locate a specialist in Jacksonville and later one in Birmingham, Alabama. We would come to find out the severity of Cole’s condition through the second specialist – labeling it as one of the worst he has seen in a child so young. He also offered a very different approach toward the disease that would lead us to a third opinion from the specialists at Boston Children’s Hospital (where the disease was discovered nearly 100 years ago).
We were told we have a limited window of time in which to act. We will move forward with a surgery that is fairly extensive and invasive with no guarantee of any change in outcome as the disease runs its course. But we are at peace that this is the right decision and so Cole will undergo surgery in Birmingham this week. The recovery will potentially be long and hard. An immobilization device (petrie cast) will be required for at least three weeks.
We’re on a curve… and to be honest, we aren’t sure how many curves there will be ahead. I’m not sure anything grows and stretches your faith and trust in God as much as the health and future of your children. We stand in a place where we are totally out of control, but we stand firmly knowing the God who is in control. We pray… and we pray hard. And we pray to a God who not only hears us but has the power to respond accordingly. Thank you for standing with us in this journey. God is good… all the time and at all points in this road of life – especially the curves.