God's Faithfulness to us in the Middle of a Storm

2011 started out to be rather scary for us. At 1:00 am on January 1, Josh called us to tell us that he couldn't sleep because Daniel was "talking." I thought he was having a bad dream, but when he wasn't responding, I turned on the light in their room to find him having a seizure. I tried to arouse him out of it, but nothing worked. I immediately told Frank to call 911. Within minutes, there were paramedics and a fire truck in front of my house. They came in, scooped Daniel up out of his bed, and immediately took him out to the ambulance. Somehow, in the middle of the chaos, I managed to call our pastor and post a quick prayer request on Facebook. It's all a blur now, but I know how important it is to take our requests to God. He's held Daniel's life in His hands since the day He created Him, and we know that He will be faithful to care for our son in everything.

We figured out that Daniel's seizure lasted at least 45 minutes; it's more likely that it lasted more than an hour - that's a very long time for a seizure. He also had a temperature of 103.4, and the doctors think that's what caused the seizure. Thankfully, the ER staff at Community Hospital got things under control very quickly. And the best part was that I recognized one of the nurses. Her daughter goes to school with my kids. The moment I recognized her, I knew that God was not only taking care of Daniel, but He was taking care of me. My childhood best friend has epilepsy, so seizures are nothing new to me. Seizures that won't stop, however, are very new to me, and I've never been so scared in my life.

From the day Daniel was born, I sensed that there was something "different" about him, but I couldn't put my finger on exactly what it was. He was a little behind in hitting most of his developmental milestones, but it was nothing to worry about. He had physical therapy to help him learn to walk, and he was walking after only one therapy session. At 2 1/2, he wasn't really talking in more than one-syllable words, so we called First Steps (Indiana's early intervention program) to have him evaluated. At that point, we saw an orthopedic doctor and a pediatric neurologist, and they said there was nothing to be concerned about with him. However, they were wrong.

We saw a neurologist at Children's Memorial who diagnosed Daniel with speech and verbal apraxia and recommended OT, PT, and speech therapy. In November 2008, we began seeing a developmental pediatrician, and her diagnosis was ADHD and autism spectrum disorder. The ASD diagnosis was not surprising because I suspected that he fell into that category all along. The ADHD was a little surprising, but I also knew that we could manage that with meds.

However, NO ONE addressed the sleep issues we were having, and NO ONE ever suggested doing a CT scan, an EEG or an MRI - until Daniel had a seizure and was transferred to Comer Children's Hospital at the University of Chicago. The first question Dr. Tonsgard asked was, "How long have these sleep disturbances been going on?" I told him that I couldn't remember a time when he didn't have them. I was hoping and praying that someone would order an EEG and a MRI to see what's going on, and that's exactly what he did. Finally, we might get some answers!

Sure enough, the EEG showed that he has Rolandic Epilepsy. It's a mild form, and it should go away between 16 and 18 years old. The MRI, on the other hand, showed something more. Daniel's cerebellum is smaller than normal, and the space in the back of his brain where the cerebrospinal fluid is, is a little bigger than normal. Neither of these things is anything we need to worry about, but they DO need to be monitored.

The end result is that I am thankful and blessed that God takes such care of Daniel. While going through such an ordeal is scary, getting answers is a relief. Now, we can pray more specifically for him, and we know that we need to be more vigilant at night (by putting a video monitor in his room). I've never doubted that God holds Daniel's life in His hands, and I know that He has a purpose in all that He does. I'm glad that He has a plan for Daniel, and I'm looking forward to seeing what He will do next.

So, I am choosing to trust Him and rely on His promises to care for Daniel. I am not going to worry constantly because that would just be a waste of time. I'm thankful that God loves us and that He is ALWAYS faithful to keep His promises.