This Summer my family took a journey out west. We drove for four days with all 7 kids bundled into our 12 passenger van before we hit our first big goal: Yellowstone.
An interesting thing happened as we made our way further and further down the road. The landscape which started off looking much the same as Illinois morphed ever so slowly. Before we knew it, we looked out the window to see hills and then mountains towering in the distance. And shadows seemed to be painted in strange locations.
After four days of driving we reached Yellowstone National Park– full of mud pots, furmeroles, and shooting geysers. My husband, being the planning man that he is, downloaded an app with a tour guide that using a gps system, tracked where our exact location was in order to tell us which stops were worth our time and what to skip. We loved hearing about the most picturesque places and where to hop out for a special memory making treat.
At one point, our tour guide told a story of one of the first Europeans that stumbled upon Yellowstone. That man made a funny quip about being unsure if he had actually discovered the fire & brimstone hell of the Bible. It dawned on me — what to us is beautiful, serene, and a glorious mystery — some of the first settlers believed was a real here on earth hell.
It’s one thing to stay on our rope encased hard wood planked paths — safe from the hot and present danger that comes with the volcanic terrain, it’s another thing all together to hike it without signs, tour guides, or apps to tell you how to stay safe. Imagine falling into a boiling mud pot — or Old Faithful.
There’s a fine line from observing the beauty of the colors, heat, steam, vapor, sounds of rapidly boiling earth from our little view in our safety spot. It’s another to walk it without knowing what lay ahead. You might just be boiled a live.
You see, what occurred to me is that knowledge, wisdom, and a healthy dose of perspective is an important thing on a trip to a place like Yellowstone. These are also important tools for the many journeys you will find yourself exploring in life.
This past year, our trip West isn’t the only journey our family has found ourselves on. We’ve been navigating a rough, somewhat rocky, a bit dangerous, and a very mysterious terrain.
Not sure when we veered onto this course. Not sure how long we’ve been traveling this go around. Suddenly, this past Fall, when faced head on that our oldest son couldn’t walk the halls of his school anymore without help, we decided to find a doctor who might have insight.
We waited months for the appointment date and soon heard words we never knew of. Neuropathy.
That’s not the road we thought we were on. We had grown used to terms like cerebral palsy but we didn’t know what this new diagnosis could mean.
This news meant a lot of tests including MRIs and nerve conduction tests. That is a story for another day, but long story short that EMG and Nerve test showed a small picture but a picture nonetheless.
This picture showed a boy whose body had slowly eaten away at the myelin that covers his nerves. Of course the longest nerve in the body, the one that stretches from the spinal column down into the big toe, was affected the worst. This test revealed the reason for falls, unsteady gait, and slow rate of movement — feeling had fled his feet completely. The hands — fingers had already begun to deteriorate, as well.
After several more diagnostic tests Adam received his first dose of IVIG at our local hospital. We were told there is a chance that the IVIG can give his body a chance to heal by remaking its own myelin.
The day that is etched into my memory is when I gazed across the room seeing my son’s doctor poke and prod his foot. No response. It felt like a decade worth of thoughts and fears collapsed onto me at that moment. When did we get here? I wondered. And how do we get out?
From last Fall to the Spring our son went from needing some assistance walking mostly long distances to not only needing a walker but to needing a wheelchair for long distances.
Our medical team believes what we are dealing with is an autoimmune disorder called CIDP. To put it into perspective — the beginning of 9th grade our son could walk by himself unassisted to the end of 10th grade he needed full assistance.
Last Fall we had no idea what kind of crazy ride we were already buckled in for. We thought his CP had progressed but now realize it isn’t even muscular — it’s in the nerves themselves.
Right as we thought we were navigating the path we were put on, we found ourselves somewhere we didn’t fully understand.
This journey is heartbreaking because we feel so helpless. We want to turn this ride around and so we are hoping that this what will happen by following the treatment plan. While driving this road, though, we’ve seen love, joy, faith, and courage in the most unexpected of places. We’ve seen God meet us in the pit of despair.
We’ve witnessed the words of a true child-like faith. We see how God uses weakness to reveal His strength. We’ve tasted joy after some drenching storms that seemed unending. The sweetest rainbows followed that filled our hearts to overflow in gratitude. We’ve felt hope with intensity of birthing pains as God does a work in and through this.
For those of you who have been walking this road with us, thank you. Your support, your prayers, your love means everything to us.
We ask also that, if you feel led, to please pray for our son, Adam, and for our family.