Adam’s story left off in the Spring of 2019 when we brought him to a new neurologist who believed he had a degenerative genetic condition called CMT.
It was May of 2019 and the day finally came to ride down to Chicago to meet with Adam’s new doctor who was going to run two tests: an EMG and a Nerve Conduction Test. We were hoping to find the root cause of his gross motor regression and difficulty walking.
It was a difficult month leading up to this day — we were dreading how painful and difficult the tests would be for Adam. The month was filled with prayer, journaling, and reading about what we were possibly facing. Adam’s walking continued to get worse and by this point he was more comfortable sitting in a wheelchair for any amount of travel or prolonged activity.
What happened next is a testament to one of the ways the Lord works — by knowing just what we need, by hearing our prayers and answering them in such a tangible way, by meeting us in our weakness, our lowest days, and pointing us back to him.
We must have been early that morning because as we boarded the train, my husband and I were relatively alone — there was only one other man who had beaten us on. He was standing near the front of the train car in the aisle.
After pushing Adam up the ramp, in his brand new wheelchair, my husband and I took our seats, when suddenly the other man approached us and nodded at Adam. He turned to us and told us how he used to be bound to a wheelchair.
He said he knew what it was like to live in one of those. He then went on to explain how he was a lost cause to doctors — even the best in the country couldn’t help him — having such a rare degenerative disorder that he spent a good portion of his adult life in a wheelchair.
At first I was wondering why he was talking to us — and then realized what an amazing thing it was that he was sharing his story, his past with us. Although he didn’t know it, we were heading downtown to find out if our son had a rare degenerative disorder himself. He also didn’t know it was Adam’s very first day riding his wheelchair. It wasn’t a day like any other day – – it was a day we felt somewhat defeated. Bad news seemed to be finding us a lot lately. We lacked hope and were afraid of what we would hear at this appointment.
As I stared up at the man I realized that he was standing up — fully capable of walking on his own and he was no longer in a wheelchair. It took me a second to comprehend this truth. “What happened?” I asked, mesmerized at this man’s story.
How are you able to walk? I wanted to ask but I sat there waiting for him to fill in the details. Something clearly had changed, I thought, for him to be standing here now.
He looked straight at me and said, “I’m a miracle from God.” Looking around the still empty train, he concluded, “the doctors don’t know how it happened.” Then lowering his head down a bit, he said with a look of certainty, “I’m a man of hope.” Glancing over at Adam with a smile and a twinkle in his eye he said in a half whisper, “I believe in hope.”
“I believe in hope, too.” I responded — some how feeling that we were both speaking in code.
He then told me that doctors are now studying him and how he was able to regain strength after all that time – and how his disease left him. Tears welled up in my eyes, as the man took the seat in front of us and people started filling the train. We rode on into Chicago in silence.
The following verse flooded my mind.
May the God of hope fill you with all joy and peace as you trust in Him, so that you man overflow with hope by the power of the Holy Spirit.Romans 15:13
Adam later met with his new doctor who was amazing. He made a difficult and painful test more bearable. My husband and I took turns distracting Adam with trivia games on his Kindle and trying to beat him at Yahtzee. They numbed his legs with a topical cream before they put the wires under his skin. Adam is such a trooper — he did fantastic for such a hard day.
As the doctor watched the computer monitor, he commented a few times to his assistant about what the test was showing. He asked if any autoimmune disease runs in our family. A few moments went by.
Looking up at my husband and I, he smiled, “I believe I have some hope!”
I stared at him wide eyed.
What did he just say?
He went on to explain that he believed Adam was suffering not from a genetic nerve disorder but from an autoimmune one. With the right types of drugs his nerves could heal themselves, he told us.
Adam had a few more tests in the Summer of 2019, including a lumbar puncture and MRI, and then was diagnosed with CIDP which stands for Chronic inflammatory demyelinating polyneuropathy.
Essentially, his immune system is attacking and eating away at the myelin which covers his nerves. Because of this, his nerves don’t receive signals correctly — especially the nerves going all the way to his big toe and the nerves going to his finger tips.
We were told to start him on once a month IVIG treatments (a type of plasma infusion) to calm down his immune system.
That day I left knowing fully that God has heard our prayers. The Lord is near to the brokenhearted. He knows what my son has gone through. That is because He is intricately involved in our lives — day to day. I believe fully that He spoke through that man on the train that day and through the doctor later that morning.
Later, as I was reflecting on what had just happened and was sharing this story with some family, I remembered what I had written in my journal about a month before.
Hope. It feels like Spring after a long Winter. It tastes like water to my dry parched soul.4/6/2019
That day I was filled with hope.