If you are still with us on this journey, we want to pour out a huge bucket of gratitude on you. Thank you so much for continuing to stand with us in faith and to kneel with us in intercession. We stand in deep waters right now . . . pushed into the oceans of the unknown and “trust without borders.”
“Trust without borders” means releasing all control, making the tough choice to obey even when it looks like you could drown. We’ve moved into that frightening place of the unknown—into the great mystery of God’s sovereignty and suffering.
And you have joined us out here on the water, in this place of great mystery. We can’t thank you enough. Truly, we are grateful for your love, support, and especially your intercession and faith.
It’s been quite a week!
On Friday, we drove down to Austin, Texas, for some informational meetings on Neuromyelitis Optica (NMO: check out the video on this website, it’s very informative). The trip was extremely hard on LeRoy. His pain feels like he’s being stabbed with a searing hot ice pick, over and over. The pain was relentless as we traveled and by the time we arrived at the hotel, he was ready to pass out from the exhaustion of dealing with it. We had no idea traveling there would be that difficult for him, but any movement at all stirs up the nerve pain to an excruciating degree.
LeRoy was in no condition to go to the meetings on Saturday, but he encouraged me to go without him and see what information we could get about this rare autoimmune disease (estimated that only 4,000 people in the US are affected). It was a struggle to leave him in that fragile condition, but I put on his TENS unit for the pain and left his meds, fruit, water, and nuts beside him. He needed that rest after the horrendous drive.
The meeting was helpful, informative, and encouraging. It was the first time I actually met others who are battling the destruction from NMO. The people I met are all still working and leading a fairly normal life. None of them have spinal cord damage anywhere near what LeRoy does, but they told me about several who were unable to walk at all and once they got on the immunosuppressant meds, they recovered all or most of their function. As each person I met shared their small (and some large) victories over the debilitating effects of this rare autoimmune disease, hope began to grow again.
Everyone I met had heard of LeRoy’s Neurologist, and spoke very highly of him; they said he’s one of the top NMO doctors in the nation. That was encouraging. Most of the people I spoke with were well informed, and have walked on this NMO journey for several years. That was helpful to have personal experience relayed to me by “survivors” of a disease that is life-threatening.
Walking out to my car to drive back to the hotel, I had a private praise and worship session. It was so good to be refreshed by hope again; the days had grown so dark, and the nights so long, with pain dominating our lives . . . it was a blessing to receive tangible hope that it might not always look like it does right now.
Candles and Flowers
Monday was a marker day for us . . . thirty-six years. And although neither of us had bought even a card or had time to prepare anything special, even that was taken care of by thoughtful friends. We were blown away Sunday evening when we arrived at our little cottage (a beautiful guest home of friends, where we’re staying this week) to see a large bouquet of red roses from my precious sisterhood! Our hosts had prepared a lovely little table for us with beautiful place settings, in front of a candle-lit fireplace, with a delicious catered meal that a dear friend planned and provided!
My sweet friend is one of the most thoughtful people I know, and she made sure that the day was marked well with kindness and beauty.
When I stepped into that sweet cottage to see all the love that had gone into making this very different anniversary special, the tears started flowing. We are touched by how well you all have loved us. We are blessed beyond measure!
The Journey Continues . . .
On Tuesday, we had the neurology appointment. And again, I was encouraged! They spent ninety minutes with us, answered tons of questions, and really listened. They have a very positive approach and told us that there is a good possibility of LeRoy regaining full mobility and improvement of his bodily functions (where currently there is paralysis). That was a huge encouragement! They are going to make some adjustments with medications to help with his pain and start him on a course of steroids for six weeks.
They aren’t starting immunosuppressant drugs yet because they’re still trying to determine whether this is actually NMO or Neurosarcoidosis. If it is the second disease, the prognosis is much better, but we know that every cell of LeRoy’s body is in the Father’s hands—no matter the diagnosis.
It is disappointing that the doctors still don’t have a clear diagnosis because it seems crazy to be taking medicines (like high powered steroids) without knowing exactly what we’re dealing with. But, as my nurse friend stressed to us . . . he isn’t getting any better, and you have to move forward with some kind of treatment. We’ve radically changed our diet; no gluten (which being Celiac, I’ve not had for years), no dairy, no sugar, and packing as much nutrition into every bite as we can find! (I’ll probably write a post or two on that later.) None of our “natural” approaches have made a difference—but we’re sticking with it.
While we’re still in Dallas, they set up appointments for LeRoy to get some good physical therapy; the last one is tomorrow and then we’ll head back home. We’ll be back here in six weeks for another appointment with the neurologist to see how the steroids affect the lesions on his spinal cord. They said it may take a long time, a year, for him to really feel better, but still, that news is better than telling us he only has a month to live!
Today is a better day. LeRoy started the steroids yesterday, and feels better than he has in a very long time. It isn’t a permanent fix, it isn’t a cure, but it’s enough to stir some fresh hope.
So, I’m dreaming today . . .
Dreaming of years ahead with our little ones . . . playing at their Poppy’s knee, of games of chase and tag, of officiating weddings, and celebrating graduations . . . of hiking trails again, maybe finally reaching our dream of tackling a bit of the Appalachian Trail!
I’m dreaming of God giving us another decade or two of fruitful service for Him. I’d about given up that dream. I’m praying for relief from the pain, for health, for future ministry . . . but most of all, we’re asking God to teach us more about Him through this season and allow us to be used by Him in whatever way will most glorify Him. Fruitfulness through pain or healing, either way, we pray God will use us to our last breath.