💪🏻 1/5 10:30

Ethan had a fairly ok night. His oxygen dropped into the 60’s. He was purply in color. As I laid down I began to just get overwhelmed with the notion of “is this kid going to even make it?” He doesn’t seem to be progressing. Am I going to have to, or even be able to walk out of this hospital alone? How does one cope with the loss of a child? He’s going to freakin die on me. Come on Ethan. Please.....

I am grieving already. I wanted to puke this anxiety everywhere and expel it away from my body. My mask was saturated in tears that were endlessly falling and plunking down my face. You know what else was awesome? My mask was full of a copious amount of cry snot. Absolutely disgusting. I changed my mask 3 times. 

I didn’t want to talk to anyone I just wanted to cry away my fears. Our nurse sat next to me and let me be in my dark place. A dark place indeed. I am glad she didn’t talk much. I am not in a spot to “talk”.  

I get a bit upset at the idea of “talking”. What is anyone going to say to make this any better? Nothing. There are no words. I just want to be a brat and process my own way.

I have watched Ethan decline over the past several weeks. I am not blind. I am not stupid. There are little wins here and there but over all he is doing poorly. I am grasping to the wins because I am just hopeful that somehow and some way he will come out of this smelling like a rose in typical Ethan fashion.

When people say “you are going to hell” in jest all the time. Everyone has their own notion of what hell may be like. A fiery place where you shovel coal? A torturous place where you endure physical pain?  What about a place where all the most annoying people you have ever met being your room mates? Being surrounded by idiots? Being stuck in grid lock traffic on a hot summer day with no air conditioning behind a truck full of used portapotties...oh yeah and you are down wind. (That one was very specific 😳).

I realized I am in hell. My version of hell is watching my child decline, with little wins but an overall decline. Watching him “suffer”, not necessarily in pain but he is drowning in his own lung fluid. A slow drowning. I am not able to help, I can only watch him drown, with a front row seat. 

Also in my hell is sharing a bathroom with pigs day in and day out, not understanding why so many people can get their paper towel in the garbage can. Not understanding why the floor is always sticky or why so many people have issues getting their urine inside of the toilet.

Also in my hell is not having a place to go to be alone. To always sleep with beeping, people talking, garbage can lids slamming shut, noise. These people have a job to do. They can’t be expected to be silent. They need to communicate to one another. Every night I am jamming in ear plugs but still hearing it. Not lovely noise like an lake gently meeting the shore, horrific, panic beeps, heart rate increasing noise that I think will forever leave a scar. I think I am losing my hearing a little because of it.

Also in my hell, an uncomfortable spot to sleep (frequently with the light on) with people in the room. Waking up to 3 people in your room, with bed head, and morning breath on the inside of your mask.   Never getting a break from the blasted mask. I hate covid. I want to punch covid in the face as hard as I can.

My body has created an intense anxiety driven reaction to make me feel tense and ill when I leave the room for any length of time. The fear of picking something up on my shoes or hands and bringing it back to the room. I am physically unwell when I leave for any period of time. I just don’t feel good. I don’t like to leave and feel much better staying put. Everyone says “go take a walk” and it’s like saying “go get a stomachs ache”. No thanks.

I decided that the joke is on hell. This morning I woke up and had a bit more rest. I regrouped and am feeling better. The thing about hell is it is supposed to be just awful. I mean this hell is doing a pretty good job but I am getting tired and mad at my hell. Ask Paul how things go when I get mad. I am mad as fire, at hell.

Here’s what I said to my hell this morning. I am not going to become bitter.  I will continue to be kind to everyone. I refuse to be kicked and bullied by my hell.

I enjoyed my cup of coffee this morning. I enjoyed my coffee so much I made a second cup of coffee too. I enjoyed watching the sun rise. I put some music on for Ethan and I and I am enjoyed that too. I feel like I am winning a bit in some small way against this hell. Hell isn’t a place for enjoyment. Ha! I am not going to submit to hell’s grasp. I am going to stare it in the face and flip it off. Flip it off hard...both hands and maybe even stick my tongue out at the same time. And a swift kick to the balls.

Last night Ethan had two episodes when his oxygen level dropped into the 60’s.  He takes a long time to recover. But he does recover. His blood pressure was stabilized which is a small win. Janis is mostly behaving. They were able to make his fluid exchange even. That is better than him being positive. His frail body has grown again with the girth of fluid. He is like a giant water balloon. His arm is weeping fluid through his skin. There is no visible  holes, he is just weeping through his skin.

Ethan’s cardiologist came in today. I told him I needed some frank discussion. No sugar coating. What are his thoughts? He said he expects Ethan to make a full recovery. He said to expect a lot of rehab as well as time to recover. I said that I hoped he would recover. Then he said “Hoping and expecting are two different things and should not be confused.” Holy shit (why does autocorrect change the word shit to shot all the time on me. I never mean holy shot. WTF autocorrect?) what a powerful statement.

Ethan’s xray had a small area of left lung show up this morning. That is better than yesterday. Suck on that hell! 

I may take a walk today just to show hell it is not going to control me. I know Ethan is in good hands. I will even do it with my shoulders back, head held high and if I puke, I puke and will aim it at my hell.

I appreciate all your notes and texts of encouragement. They are so helpful. Thank you for helping me not feel alone. I have never felt alone in this journey.