I can’t sleep. It’s mostly dark in our room but a hint of nightlight shines from the bathroom. We don’t usually keep a nightlight on. But during the height of Stevie’s sickness, we were taking him to the bathroom 15+ times throughout the night. He is in our bed and has his back towards me now. He’s been sleeping hard, his small body exhausted from fighting this infection. I can see the outline of his ribs and his spine. Dented shadows along his back that didn’t used to be there. His lips are chapped from dehydration, but also traced in red, from the Gatorade we finally got him to drink. I’ve hardly seen him smile in days. 

When he does things like hold my hand, or sit in bed watching a TV show, I realize how sick he really is. He’s never done these things before. He asks to sleep during the day. This is new territory for me. The doctors told us to beware if he became “lethargic”. Is this lethargy? Or does he need rest to get better? A fine line I’m sure. 

My mind wanders, tracing our steps through the last 10 days. I talked to the Department of Health today. They tracked us down because Stevie’s condition was reported by the lab who did his cultures. Now it’s a thing. A health crisis in the community. So… Where did we go? Who did we see? What did we eat? Drink? Do? It’s a lot to remember. They inform me that he is not to attend school or be in daycare or play with other kids until he is cleared by them. Could take 1-2 months. I swallow hard. A quarantine sentence like this could be too much. It could set him back. He needs school and friends and therapy. He’s already too far behind. But what can I do? This is protocol. 

I think about what we’ll do for the next 30-60 days. I look over my calendar and make lists. Cancel swim lessons. Let teachers know. Let therapists know. Out-of-town trip? Don’t know if we can swing it. Do I cancel my upcoming photo jobs? Do we stop going to the gym too? How is all this supposed to work? I feel overwhelmed. I feel sad for Stevie. He’s not going to understand why he can’t see his friends and teachers for such a long time. 

I can’t say I totally understand why these things happen to Stevie. I know it could always be worse, but a break for him? Well that’d be great. No more complications with his heart. No more complications with his eyes. No more complications with his development. No more complications with his health and general well-being. Just let him BE for a little bit. Let him get comfortable in his own skin. Let him excel and have the chance to be good at something without all the setbacks.

My patience is thin now.

My mom came here from Utah to help us. I feel comforted just having her around. I don’t know what to ask her to help with, I’m just grateful for the company. And Stevie is glad she’s here too. He asks for her in the middle of the night and I remind him that he’ll see her first thing in the morning. 

I should sleep now but my mind is still full. I keep kissing and caressing his little back, telling myself it’s a comfort to him. When I really know it’s for me. My body isn’t run down like it usually is at the end of the day. I’ve mostly been sitting in bed with Stevie – not using up all my energy chasing him around and arguing with him. Part of me is ok with that. It almost feels like a glimpse into how things would be if Stevie was a regular kid who hung out at home and watched TV. But since his spirited personality is gone for the moment, it will never feel right. It’s not him. And I’ll welcome that crazy kid back whenever he’s ready. Maybe keep the part where he watches TV.