Yesterday we traveled back to University of Virginia for Daniel to see a top rated pediatric sleep specialist. After typing every detail of our extensive family history and Daniel’s symptoms she stated she could help Daniel.. Tears of pure relief streamed down my face as she encouraged us and explained her suspected diagnosis. We will have another extensive sleep study completed in mid May. She is suspicious of a relatively rare sleep disorder in which the person needs a tremendous amount of sleep as compared to the norm and their body basically breaks down from sleep deprivation. Only 2% of the population are diagnosed with this sleep disorder, but it can be treated with medication and a strict schedule.
I’d like to feel elated that we may be close to a diagnosis, but instead I am cautious and somewhat serious. I’d like to let my guard down just a little, but instead I’m still stoic and careful with my emotions. I’d like to believe we are finally coming to an end of this roller coaster journey, but I’m too scared to believe with all my heart that the answers may be at our fingertips. I’d love to wrap my arms around Daniel’s neck and whisper, “It’s really going to be okay”, but we’ve been burned and led astray so many times it’s difficult to even know what to believe anymore.
Before we left on our road trip yesterday, I didn’t devote an extreme amount of time to intense prayer. I did pray, but it was more of a letting go process, than actual praying for answers. I have to admit that this adversity has taken its toll on Daniel, and all of us. We’re all weary, stressed from the unknowns, and have nerves pulled as tight as stretched rubber bands. So, instead of praying for answers, I simply asked the Holy Spirit to completely intervene, because I didn’t even know what to pray for anymore.
So, now, we wait…once again. I really don’t know if this is the answer we’ve hoped for all along. I don’t know if he will get better any time soon. I don’t know how much longer Clif and I can hang on with the stress of Daniel’s illness. the bills piling up and watching our son feel so awful most of the time. I do know that I am choosing faith, I am choosing prayer and I am choosing to keep putting one foot in front of the other. God gives us the strength to just keep breathing and I am grateful.