Life keeps moving.

I think one of the hardest things when dealing with a chronic illness is the unpredictability of different aspects of care. The emergencies, the mundane care, the maintainence.

Last night Q was upset because she suspected another infection. She woke up wanting to be seen by a doc first, then head to schol. We toyed with waiting until our Kaiser ped office opened at 8:00am to try to get in or go up to the Kaiser ER (“advanced care”), as we know 7:30am we usually find it mostly empty.  So we went ER for the quickest way to get answers and within 45 minutes we know she has another UTI and we were on the way out the door having had the first dose and a script. A month ago a UTI turned into a bladder infection, then (transplanted) kidney infection, then blood infection. It was a mess. She was scared this morning. It’s why she was admitted and nearly spent her entire birthday in the hospital a month ago.

She’d wanted to go to school today, but the doctor wanted her to let her body rest and do what it could to fight the infection. So we are home, and she is sleeping. I am hopeful she will sleep all day, poor thing. She is tired a lot, but that is for many other reasons that require it’s own analysis, but today it’s to fight infection.

Because I’m human, I was annoyed this morning because I am busy and working on a client deadline. I mean, I will get it all done. I always get it all done because I have a lot of strategies – one lucky thing is that I need less sleep than most.  One of the reasons we originally set up our life (even pre-sick kids) with my ability to “freelance,” was because I wanted to be a SAHM and do some work here and there. I forgot that for a hot minute this morning as I growled to myself when my daughter advocated to be seen. This type of situation is the exact reason we set our family up the way I did. I’m lucky we can do it this way. This morning, I brought my daughter home, helped her get into bed, and tucked her in with a big glass of ice water. 

The unpredictability is challenging. Sometimes it is really, really hard. But we can do hard things, right? My kids teach me that daily as they fight each day to move through this world, such as it is. 

She has plans tonight, and she’ll rally and be fine to do them. Most parents would probably say, “If it’s a no school day, it’s a do-nothing day,” but life is unpredictable. If she can go do something, I’m going to let her. 

Well, hello there, Haunted Mansion. Because life moves.