
I'm going to do something that I didn't want to do: take a moment to have an almost-breakdown about the RAD and the RSV and the other aggravating acronyms that make me cringe and want to throw something across the room whenever I see them attached to my son's name on his medical documents. I never like to whine too much about these things around other people because I know that it could be extraordinarily worse and in the grand scheme of life, I should be keeping my mouth shut and my concerns to myself. I recently read a blog in which the writer was feeling similar to the way I was feeling when a commenter said that life is subjective, that it's not a competition, that just because someone's hard might be harder than yours doesn't make yours less hard or unpleasant. I really couldn't find a single ounce of anything but the honest to goodness truth in that notion.
The thing is, I'm feeling defeated. I was driving to the pharmacy the other day to get refills on one of Ethan's nebulizer medications. Halfway there -- and mind you, it's about a three minute drive -- he began choking. Choking on mucus, making this awful grinding noise with his throat as I watched his eyes well up in the backseat mirror. I pulled over at the playground I was passing, flung him out of the car seat and stuck my fingers down the back of his throat and removed a huge glob of mucus. He proceeded to vomit all over me and then cried, cried, cried as he clung to my neck. And that was a good day.
When his RAD is flaring up, we can't leave the house. It's fine the first couple of days but once we reach the one week mark, we're both ready to begin start climbing the walls. I walk around with snot stains on my jeans and a worry in my heart because Ethan has refused ninety-five percent of the food and drink I've offered for the day. I take forty minutes getting him down for a nap and within minutes, he's coughing and hacking and choking and unable to sleep. He spends the days exhausted, wanting to sleep but being unable to, coughing, hacking and sounding like Darth Vader. That wheeze is the worst. I can never get the sound out of my head.
These days are hard and they oftentimes are lonely. I try to explain to people how I can't even use the bathroom alone because I can't let Ethan cry, even for a second, when he isn't breathing properly. It's difficult restricting the activity of a baby who just wants to go. It's difficult trying to be one step ahead of them so they don't cry, don't stress, don't excite themselves too much. It's difficult trying to get them to eat when they don't want to because even taking a moment to chew or swallow makes them feel scared that they cannot breathe otherwise. Mostly people remind me that this goes away, that maybe it will return once every few months, that we really are lucky. They're right, I know that, but these days are still so hard. The walls close in on me while I listen to my son wheeze, listen to him cry and cough and roll around in discomfort at nighttime.
I just wanted to take a minute to say that it's temporary, but it's still hard. These last few days have been some of the hardest. Today Ethan was also diagnosed with his very first ear infection. It was one of those things that just made me laugh at how life can sometimes be, challenging us to see how much we can possibly take. Ethan went to sleep smiling tonight. A good friend of mine managed to find him a replica of a toy he adores at his swim school and his day was entirely made. It's the memory I'm trying to keep with me of today as I get ready to close my eyes and wait for tomorrow.

