On Saturday, our darling Dolly started to look like this…
She said her head hurt and she felt a little warm. When you live with a child with a chronic medical need, it’s a little like living with a ticking time bomb. I know, eventually, she’s going to get sick, but I never know when. For a control freak like me, not knowing is REALLY hard. We made it all the way through cold and flu season with nary a virus. I scrubbed and I sanitized and I reminded everyone why we were staying isolated.
For our girlie.
Despite the scrubbing, and sanitizing, and reminding, I worried. Constantly. I found myself checking our Dolly’s pulse ox (yes, we own a hospital grade oximeter) and listening to her lungs in a way that was unhealthy. I would ask FPD all the time if he thought her lips looked bluer than normal. I was obsessing.
When she got sick I told myself we would wait and see. Wait and see. She might be okay. This is her first real illness since her surgery over a year ago. She’s had part of her heart corrected now. Maybe she could fight it off herself.
She feels awful. That pesky right upper lobe of her lung is WAY gunky. She’s on antibiotics and we’re doing round the clock nebulizers. Here’s the thing about Dolly though. Even when she feels like the pics above, she works her way up to looking like this.
She feels like absolute garbage, yet she wants to be ‘happy’. In fact, she’ll insist she doesn’t feel bad at all. I think this comes directly from the first two years of her life, and how awful she felt that entire time. I think she’s petrified to be sick again. This breaks my heart, especially since I know that we’ll have to make her a whole lot sicker before we can make her better.
So, I’m going to try not to listen. I’m going to try to just live. Right now, she’s tucked into my bed all snugly warm with Ibuprofen and an ice pack. She is breathing easily thanks to her nebulizer and, for now, she may not be happy, but she’s okay.
–FullPlateMom, who might just check her temperature one.more.time.