How It All Began

In November 2012, my ten year old son was at his yearly orthopedic appointment to monitor his scoliosis when the doctor noticed his right side abdominal reflexes were slightly delayed. He had me come look, and I could not see a difference. He was concerned enough to order a spinal MRI. I asked him what he expected to find, and he told me that he suspected my son had a syrinx, but obviously not a very large one since his symptoms were so mild. My son had the MRI a few days later, and a few days after that, we were called by the orthopedic's staff to tell us we needed to see a neurosurgeon. I asked if anything was wrong, and I was told that there was nothing wrong and that anytime a spinal MRI is done, you must see a neurosurgeon. How stupid I was! A few days after Thanksgiving, my son and I sat in the neurosurgeon's office in a well known, respected Children's hospital. He had been called down to emergency surgery, and we were instructed to wait for three hours for him. That was my first inclination that something was wrong. My son and I came prepared. We had plenty of snacks, games, and books to keep us occupied. When the neurosurgeon walked in, the first words out of his mouth were, "It's really bad, and we need to move quickly." I informed him that I didn't understand, and he explained that my son had a Chiari I Malformation and a Holocord Hydromyelia. To be quite honest, I had never even heard of those before. He started talking to me like I knew what all of this was, so I had to slow him down. I was in shock as I listened to him explain what this disease was and how my son was lucky to not already be paralyzed due to the amount of fluid in his spinal cord. He sat with is for about two hours explaining everything. My son needed a decompression surgery soon. The neurosurgeon felt it was risky to even wait until Christmas because he expected my son to be paralyzed by then. Before I left, surgery was scheduled for December 12 (12/12/12). I drove home completely shocked. I cried silently, but my son was very aware of my emotions. I asked him if he was scared, and he said, "Mom, if we're supposed to trust God when things are good, then shouldn't we trust him when things are bad?" Knife through my heart, and of course, he was completely right! At home, I made lots of phone calls to family with the shocking news. The next morning, I called other doctors for second opinions, all of whom told me the neurosurgeon was correct. As 12/12/12 inched closer, we prepared ourselves for the fact that our son was going to have brain surgery.