Fighting with Faith and Guillain Barre

One year ago today was Superbowl 46. Just like always in some form or another, we gather as a family to watch the game. I mean the commercials. Superbowl 46 we did the same, but on that cold snowy Sunday, we gathered in a hospital room with the youngest member of our family, our 21-year-old son Griffin, in the midst of treatment for a crazy rare and most unwanted neurological condition Guillain-Barré syndrome. Unheard of by us until just a few days before when he morphed from a healthy, busy focused college junior to a weak, frightened and walking only with a cane very sick young man.

 

What is Guillain Barre? The A.D.A.M. Medical Encyclopedia defines it as:

“Landry-Guillain-Barre syndrome; Acute idiopathic polyneuritis; Infectious polyneuritis; Acute inflammatory polyneuropathy; Acute inflammatory demyelinating polyneuropathy”

It is a condition that comes out of nowhere, fortunately infects very few…but can result in devastating and life-altering physical, emotional and mental disabilities for those who experience.

Griff’s journey began with a tingling in his tongue and extremities, gradually progressing to an inability to walk without falling, climb stairs or even walk unattended for fear it would result in more falls and greater injury.

Eight days of urgent care and doctor visits, two trips to the ER, CAT scans, MRI and a plethora of other pokes, prods, and questions, resulted in him finally admitted to the hospital. Their focus became to determine what was robbing our son…my boy of all that he held dear.

In between each visit to a medical facility, I would cry and beg God to change places with Griff and I. Through tears I explained to God Griff had so many dreams, he was still so young, he had plans to live abroad and study in Freiburg Germany for the next academic year.He was active, living life, dreaming…I had had my chance to live … God, please trade me up for him….whatever it is.

But- God doesn’t work like that. I knew it- but I begged him anyway. I asked my prayer warrior friends to pray – I knew they would. I have great friends.. more than great they are incredible.

By the grace of God a diagnosis was made….not MS as I had feared (thank you google for that fearful thought) but instead, another ugly name Guillan Barre or GBS as it is known, became our enemy to fight. It had a name so now I could be specific as I prayed.  I wept,  watching him become weaker and weaker. He was afraid, I was afraid.

I tried not to be. I was his mom. I prayed. I was still afraid. I kept praying. I wish I could say I was brave every day.

I was not. I was afraid. Sometimes…my faith rose up.. but other times- honestly…a lot of the time….I was afraid.

We were blessed to be given a doctor who was familiar with two types of treatment for GBS. One was done with IV solution, which sounded less invasive and quicker…. I liked the sounds of that. He, this doctor whose name I could not pronounce and who spoke an English that was tough to understand….had another treatment he preferred which had seen some good success in his experience.

I heard the words SOME SUCCESS… and I again wrestled with the fear that lurked at the edges of my faith walk. I wanted guarantees. Our precious non-English speaking incredibly smart doctor encouraged us to try his treatment plan. It needed to start quickly to allow it an opportunity to reverse the damage already done and prevent it from progressing up his body- worse case un-arrested it would continue to creep up his body, robbing him of the ability to walk at all, care for basic bodily functions,  his breathing would be affected, resulting in a respirator and the possibility of becoming totally immobile within a few days.

 

At this point, SOME success…was sounding incredibly great.We agreed to the process.

I prayed. We prayed. Those who loved our family … prayed.

“Plasmapheresis a technique that involves a patient’s own blood being withdrawn via an intravenous catheter into a device that separates the blood by centrifugation into red blood cells”

A port was inserted into his jugular vein, where he would be hooked to a machine five times over the next ten days.His blood would be completely removed, it would be spun out, removing the plasma and returned back to him clean, shiny but minus the plasma which apparently held the dirty crummy cells that were causing him problems. After the 10 days, they would be better able to tell how much of his healing would be complete and what was left for therapy to work on.

In in the midst of an illness, work of a busy college junior continues. He dropped a few classes to help with the pressure of an unknown return date but kept the ones most important to him and his degree.He is a Political Science and German major at Michigan State University (Go Spartans!) He chose to keep one class in each of those subjects. In addition… one other key piece of paper needed to be completed and emailed to his German professor His study abroad application for the 2012- 2013 academic year had to be completed and turned in that weekend. Griff was so discouraged and heartbroken… he nor I could even begin to imagine where he would be at by then or if he would even be able to return and finish out is the current semester. We were told most patients with the type and severity of his condition endure a minimum of three months in a rehab facility and possible long-term walking aids..braces, canes, crutches…

I continued to pray, and refuse to believe albeit through tears at times..he would have fallout from this disease. I prayed, my believing friends and those I did not know prayed. The body of Christ rallied around us as family and loved on us… and most of on Griff. He looked me in the eye… asking me why mom…why now.? No answers for my baby boy who is now 21. I determined in my heart that application would go in, we would not miss the deadline…. I made the choice to stand and believe even when it was so unlikely he would be able to live and study in Germany any time soon!

Slowly after day five, we began to see a small, incremental turn. …something had shifted. God was using the wisdom of doctors and medicine and tests to reverse the condition. He was still weak, he was still wobbly and his balance was questionable… but on after the last treatment… we could go home. He walked with his cane for stability…but oh what a difference! Night and dark light and day, black and white, hot and cold.

Griff was home. He climbed the stairs to our home. He was weak, and rest was still needed… but he has had no rehab, no braces, no trouble breathing, no no no nothing!

Last year we sit in a stuffy crowded hospital room, attempting to make him laugh and the Superbowl commercials…alas- only a small snicker or chuckle was the best we could get from him.. he was sick and not much into fun. I know he appreciated us being with him….but it was just not the party moment we were hoping for.

This year- we were not able to watch the game or commercials with him. Again our little family Superbowl party is different.

 

This year…. Griffin is living in Freiburg Germany, he is carrying a full load of classes, in the German language. He has climbed the Swiss Alps, explored Berlin,  applied for an internship, met some great friends and is living out the dream that just a few short months ago seemed impossible.

God is good- when we can not see. God is able when we don’t understand. God is good even when the blessing comes through raindrops… when the healing comes through pain….God is good.

Even if…the healing had not come- I declare him good. I am thankful for our trials.I am grateful for his faithfulness as we walk this path.

Again,  If I could have taken it for him I would have. Is that just a small snippet of the love God has for us? Oh.. but he is so beyond what we can understand. … but I would have done anything to help my son… anything. my life for his.

• How have you seen God at work in the darkest of times?
• How has he shown himself faithful?
• Is there an area you are struggling with today?

My prayer is for you to see how great God is in the midst of your storm. 

Thank you for stopping by!

Blessings-

[contact-form][contact-field label=’Name’ type=’name’ required=’1’/][contact-field label=’Email’ type=’email’ required=’1’/][contact-field label=’Website’ type=’url’/][contact-field label=’Comment’ type=’textarea’ required=’1’/][/contact-form]