Last week was like heaven with the Pizzazzerie post on Maddie's party. This week finds Bub the hub and I facing one of our greatest fears: our precious Avery bub is having very strange little episodes that look like...seizures. Ugh. Even writing that word makes my heart hurt.
For four years, we have been so thankful to feel like they were part of our past. I mean, that was the entire reason we went through with her radical brain surgeries. And we always knew that there were no guarantees....but we let ourselves get comfortable.
Comfortable not watching her every second of the day, looking for any signs of strange behavior. Comfortable not having to plan for, worry about, or dispense meds. Comfortable being able to focus on her recovery, instead of a treatment plan. Comfortable just being Avery's parents, not some kind of medical response team. I'm terrified that this is all over. WE are terrified.
Friday morning we are going to see Avery's neurologist to discuss a plan. It will most likely involve things that none of us wants to do....things I especially wish that I could have a conversation with Avery about, so they wouldn't be quite so scary for her. Or us. Technically I can, I'm just not sure how much she understands. It's so hard not to ever know what's running through her mind.
I would trade anything in the world for these awful things not to come back. She has come so far! It's just NOT FAIR. You'd think I
Tonight Avery and I had our usual pre-bedtime snuggle on the couch. She's one of the greatest snugglers of all time...always has been. We watched an episode of Mickey Mouse Clubhouse that she can't get enough of right now, and laughed at the same parts together. Her giggle is truly the most precious sound. While we cuddled, she reached over and absentmindedly played with my necklace, just like I used to do with my mom. I gave her a million kisses and told her how much she is loved. She gave me the same glance and knowing smile that she usually does.
Although it's easy to assume sometimes that Avery doesn't understand the things going on around her, that is simply not true. She may not have the capacity to communicate like we do yet, but she is just as sensitive {if not more} as a typical child. She senses body language and moods, and reacts to tone quickly. She may be even more sensitive to these things since she lacks the ability to ask questions instead. I know she can tell when something is up, so we have always kept our brave faces on around her, even if we are intensely worried, as we have been recently. I think she does the same for us sometimes too, weird as it sounds.
I know that we'll get through this together, like we did before. It doesn't come with any less fear though. We can only hope for the best, and do everything in our power to make it so.
