This has been a rough week. Shelby has decided that sleep is over rated. This poses a problem for me because I would rate sleep as one of my all-time favorites. This problem is not really new. Most children with Dravet Syndrome have sleep issues of some sort. Knowing this history with Shelby’s condition, I was very skeptical when her neurologist suggested sending us to a sleep specialist. We had tried this once before, but decided to give it another go. Tired times call for drastic measures. After several painful months of diligent training, we (the parental units) felt like we were winning the battle. She was no longer sleeping in our bed and we were usually only having to put her back to bed once or twice a night. That is good sleep for us. But…the good sleep seems to be over. For no obvious reason that I can see, Shelby has completely regressed. For days now we have been returning her to her bed 8-12 times a night. This regression shouldn’t surprise me. We have seen it with other skills such as speech and ambulatory control. When you are dealing with a neurologic condition, there is really no understanding what is happening in the patient’s brain or why. It has been heartbreaking at times to watch hard-won achievements simply slip away.
My husband and I decided we needed to return to the early stages of her sleep training to try to regain some traction. For us, this means locking the door to her bedroom to remind her that she is to stay in her room when it is dark outside. To make sure she is safe, Chuck and I take turns sleeping on the couch outside her room so that we can hear when she is up – and knocking on the door – and fussing. *Yawn* Sorry. Getting sleepy just thinking about it. Anyway, I wanted to show you what Shelby does when she can’t get out of her room:
This picture doesn’t quite do the pile justice. This is the entire contents of Shelby’s chest of drawers emptied onto her bed. I can’t tell you how defeated I felt walking into this for the 3rd morning in a row. I drew a spiritual correlation between this disaster and the sin in my life (anything to put off cleaning it up). Everyday this week I have cleaned up this mess to make Shelby’s bed usable again. And then, while not surprised, I am disappointed every morning to again find her space in the exact same condition. In the same way, I daily bring my messed up sins to God and ask Him to forgive me. Because He is a good and merciful God, He cleans me up and makes me usable for His purposes again. But He is so much more patient with me than I am with Shelby. In my humanity, it is so hard for me to understand how the Father is not sick to death of my repeated messes. He cleans up the same messes over and over again – willingly, lovingly, graciously.
This is the current picture of Shelby’s chest of drawers:
Everything is neat and tidy as a pin. But I made some changes. Some say the definition of insanity is doing the same thing over and over again and expecting a different outcome. Although I am sinful, I don’t consider myself insane – yet. So since Shelby has established a pattern this week that I don’t wish to continue, all the drawers from her dresser have been moved to MY bedroom under lock and key. She may not sleep any better tonight, but I will definitely feel better in the morning.
“Search me, O God, and know my heart; Try me and know my anxious thoughts; And see if there be any hurtful way in me, and lead me in the everlasting way.” Psalm 139:23-24