Originally Written: 6/20/2019
Everybody’s got their thing. I’m a problem solver. I find myself leaping toward goals. Once I see a problem, I picture what needs to be done and take the necessary steps to solve it. I dive right in and envision the path. I fix.
Sounds simple, right?
What I’m learning is that sometimes God puts blocks – obstacles – in our paths that I, that we, can’t solve. At least not on our own.
That is where I have found myself this year.
Our boy, Adam, started this past school year much like he ended it: with regression in his abilities. It’s been an upside down roller coaster ride of emotions. In September I sat in his IEP, tears streaming down my cheeks, as I listened to all the professionals describe to us the amount of trouble our son was having navigating the school. There was one path to take: he would need to use a walker. I sat there so confused. When he was younger it was speech – it was behavior – we navigated it – we worked with his team to fix those problems. But I never thought we would trade one ailment in for another. That is what has happened with our son. He went from episodes of behavior, and needed countless hours of therapies including ABA, Speech, PT, OT and now he was losing his ability to walk at an alarming rate.
From the end of 9th grade until the beginning of 10th his ability to walk degraded so much that now he needed a walker.
In only a few short months time, he would need a wheelchair for long distances and field trips.
We found ourselves waiting months to see a new neurologist holding onto the possibility that she would be able to help us with the next steps. In the past, his neurologists haven’t been too helpful, because he was classified as having CP which, as we were told, wasn’t progressive.
This Spring, we did get to meet our son’s new doctor, and have a complete evaluation with her. She had done her homework, she knew about the genetic condition he had previously been diagnosed with, but was very concerned with his issues with walking. As she studied him she told us we would need more testing with a neuro-muscular physician to rule out CMT which is another genetic disease of the nerves.
So, this Spring was filled with doctors appointments and medical procedures including EEGs, MRIs, and nerve conduction testing including an EMG.
I’ve discovered so much during this trying time. While my husband and I have struggled right there along with our son, Adam’s story reminds me a bit of three young men in the book of Daniel who were thrown into a fiery furnace by King Nebbechanezer. They were doomed, and faced certain death. But then something crazy happens. The furnace was so hot that even the guards who were gearing to throw the boys in, they found themselves swallowed by the flames.
But Shadrach, Meshach, and Abednego, they were walking around in the furnace, unharmed. The text reads, “Then King Nebuchadnezzar was astonished and rose up in haste. He declared to his counselors, “Did we not cast three men bound into the fire?” They answered and said to the king, “True, O king.” He answered and said, “But I see four men unbound, walking in the midst of the fire, and they are not hurt; and the appearance of the fourth is like a son of the gods.” Daniel 3:24-25
We aren’t alone, as scary and as troubling as this has been. Jesus has been in this fire with us. He is walking besides us, encouraging, and showing us how to stay in this place for just a little while longer.
If you read a little bit further, you see that they weren’t left in the hot furnace forever, “So Shadrach, Meshach and Abednego came out of the fire, and the satraps, prefects, governors and royal advisers crowded around them. They saw that the fire had not harmed their bodies, nor was a hair of their heads singed; their robes were not scorched, and there was no smell of fire on them.” 3:26-27
We are believing that while we are all walking through this fire, Adam will be made well. We are praying in faith that God heals our boy. We pray that this sickness doesn’t further progress, but that Adam’s life will be a testament to God’s goodness in the worst of times.