365 Days of GBS... (Blog update from Tim)

One year ago today I was visiting my parents on the eve of their big move from their house of 20 years to their condo. More than just a change of address, this move signified their transition to mutual retirement. Their months of down-sizing and their well-stocked camper, "Cubbie," testified to the fancy-free spirit with which they were approaching this next chapter of their lives. 

Unfortunately, this chapter would be preceded by another, unforeseen and unwelcome chapter. That night, at around 3:00 in the morning, I awoke to my mom knocking on the guest room door and found her and my dad in the hallway. Dad was struggling to keep his balance and Mom explained that his eyes had locked cross-eyed and his arm had lost sensation. We quickly drove to the hospital for what we feared was a stroke. Over the next few hours, we watched helplessly as Dad continued to lose the use of his arms, then his legs, then the rest of his body until only a slight twitch of his eyebrow remained. With Dad now on a ventilator and completely paralyzed, but still able to hear and feel everything around him, our family too felt paralyzed as we stood there, confused and horrified by what we were witnessing. Up to that point, most of us had never even heard of Guillain-Barre Syndrome (GBS), the diagnosis doctors determined as to what was happening to Dad. Since then, we have become reluctant experts on this inexplicable and torturous medical condition. 

It is hard to believe this blog now represents a year of this unwelcome chapter. Flora has so diligently captured the challenges, questions, fears, and celebrations that our family has experienced – and continues to experience – as Dad makes his way forward through his recovery. And while Dad IS recovering, he is still functionally paralyzed and has now lain in a bed for 1 entire year of his life. As I write these words, and try to reflect on this past year, I find myself pausing… getting stuck… simply unable to find the words to describe this journey and do it justice. There is no summary for something so overwhelming. 

I was able to spend this past weekend with Mom and Dad. Saturday night Mom and I went to dinner and reflected together. I said to her, “I feel like I should say something like ‘Happy Anniversary,’ but obviously that’s not right.” Congratulations? No. Still, something Herculean has been accomplished here. Despite the ups and downs of the past year, and multiple near-death encounters, Dad is still here. And for Mom, her steadfast presence by his side has not faltered, despite her own fears and exhaustion.

Mom said to me, “It is an accomplishment. But I wouldn't feel comfortable taking the credit. It really has only been by God’s strength and the help of our family and friends. I have truly learned what it means to walk by faith, being grateful for each day as it comes. All I can say that I've done is just show up, each day, and try to be present for what is right now.” 

I cannot express how incredibly proud I am of my mom. Her commitment and strength inspires me. The love she and my father share continues to be a blessing that pours down throughout our family. 

Dad is doing noticeably better. His voice is stronger. While still paralyzed, he continues to regain movement a little bit at a time. When I left on Sunday afternoon, he had been off the ventilator and on the trach collar for nearly 3 days straight! In fact, he now considers the ventilator to be an uncomfortable interference to his breathing! Considering where he has been this past year, this truly is something to celebrate. 

Before leaving, I asked Dad what thoughts he’d like to share for the blog. Mom was there too, and we both listened as he thoughtfully shared these reflections of this past year: 

“Well, I know more about how many alligators are on TV.” (This said after hours of History Channel reruns of Swamp People. A good sign that Dad’s dry sense of humor is still intact.)

“It’s still obvious I've got a long way to go, but I’m doing ok. I can really feel the prayers of all the people thinking of me. I really appreciate that. I am healing, although very slowly. Still, it is very comforting to know everyone is praying for me. 

I really appreciate the way family and friends have come by to visit me. It really helps break the monotony… but also gives me opportunity to hear the Word of God. Thank you especially to Rick Thomas for reading the Scriptures to me.

The staff here has been good. I’m thankful for the nurses, surgeons, and RT’s who have been caring for me – I wish I could name them all, but I’m afraid I will forget someone. Dr. Krause has been like a mother to me, always checking in to make sure I’m comfortable. 

Thank you to Flora for putting this blog together and keeping all of my friends and family up to date on my story. 

My grandkids have been most attentive. I have colorful cards and pictures hanging all over my room.

I couldn't have done this without Nancy. She has been the light of my existence. I am so lost without her. 

Then Dad’s thoughts turned to the future: 

I think about the things I can do when I get better. What will I be able to do? The things I CAN do give me strength. But I also remember that I've pledged my life to Christ to do whatever he calls me to do. So I believe he will only call me to things that I’ll be able to do. But still, I've committed the rest of my life to doing his work. This is the reason I want to be re-baptized. I want to mark this time in my life. 

When I first got this, I had a dream. I was brought to some kind of meeting where there were two doors: one leading to heaven and one leading to hell. Standing there was an angel. As I stood before the doors, I told the angel I wasn't ready. That I needed more time to be sure Nancy was taken care of.  Then after Nancy’s heart episode, she told me she was taken care of. I had the dream again and this time I said I still wasn't ready. The angel seemed to understand. I haven’t dreamed of that meeting since, and at first I worried that I had missed my chance. But now I believe it is because I still have work to do in this life. 

After a few moments of quiet, Mom said she probably should get going since she was headed to someplace she didn't know how to get to. Dad looked at the clock and said, “You still have 5 more minutes to hold my hand before you have to go.” So she did.

After that, I walked Mom to the elevators. We hugged and I said, “Let’s not give this thing another year. This year, let’s be done with it.” 

She agreed and said, “It’s hard not to feel like we've been robbed this year.” 

“We have been robbed,” I said. “We've had a year stolen from us. But thankfully, we haven’t been robbed of what’s most important.”

Returning to the room, I told this to Dad. To my surprise, he replied, “I don’t feel like I've been robbed. I feel like I've been drawn closer to the things that are most important to me.”

On Saturday, I noticed Dad had a bunch of lilies sitting in the window that had yet to open. On Sunday, at one point during Dad’s reflections, Mom drew our attention to the windowsill and said, “Oh look! Your lilies bloomed.” 

A good sign for the year to come…