4/6

I woke up this morning at 5:00 because roommate’s mom was being noisy. I am a light sleeper in the mornings so....I made my way to the shower. The door was closed and I was sort of pissed because (like a 5 year old) I wanted to be first. I made coffee and sat outside the door. If I can’t be first, I will be second.

20 minutes later, all my coffee had evaporated somehow out of my cup. What is taking the person so long in the bathroom? Do I even want to use it? I haven’t heard the shower running? Are they in there spreading fecal particles all over the place so when I go in they will rain down on me? Ew!

I knocked on the door.  No answer. I tried the door handle and it was locked. Now I have visions that someone had a vasovagal attack during their morning poop and they are just unconscious on the bathroom floor. I went and got a nurse. 

“According to my assessment, and I don’t mean to brag but I have already had one cup of coffee and I feel like my brain is working. Either someone accidentally locked the door when they left OR they are passed out on the floor.” I explained the situation as I saw it.  The nurse came in and I watched her trouble shoot.

She knocked. “Anyone in there?” She asked No answer (I had already tried that). 

She then tried to test the door handle. (I had already tried).  She pulled out some bandage scissors from her pocket and started to try and pick the lock.

“Does security have a key?” I asked. She then threw me for a curve ball....

“We called them earlier. They didn’t have a key. Someone else had the same issue and security came and weren’t able to open the door. So we just left it.” 

I paused for a moment. Really? Let me process this. Someone else said the door is locked. You called security. They came. They couldn’t open the door so they just gave up? Without know if someone had a heart attack in there? Doesn’t seem like a logical protocol but whatever. Just leave it until someone else complains?

So they knew the door was locked and didn’t put a sign up either saying that bathroom was closed or anything.

The girl kept fiddling and she finally (there may have been slight damage to the lock) opened the door and luckily no one died in there. She then said “the lock seems a little sticky. If you get stuck in there pull the emergency cord. We will come and get you out.” That makes me feel reassured.

Hmmmm...emergency cord in the bathroom. It seems that I could have fun with that. I would probably get kicked out though.

I like to sit in the parent lounge in the afternoon.  It is sunny and quiet in there. Sometimes there are other parents in there. Mostly they don’t bother me and I don’t bother them and we sit in each other’s company, silently, and it is nice. I don’t really know anyone’s name. They don’t know mine. I am “Mom”. The nurses and doctors call me “mom”. I feel I have earned the title. Doesn’t every mom? I don’t mind at all.

Today I sat in the parent lounge and listened to another lady that has equally earned the title “mom” talk about how her daughter has had half of her brain removed. Her daughter is mostly non-verbal and 20 years old. Her mom does say that her daughter does like shouting swear words out. Her daughter screams and cries a lot. Several times a day. I have heard this child screaming and having these fits. 

What we went through was a struggle. We will be dealing with doctors and appointments the rest of Ethan’s life with kidney failure and heart transplant.  His medical journey will never be over. I would prefer it to be a little less turbulent than the past several months but you don’t really get to control that.

What we can look forward to is that he will have a quality of life.  It makes me sad for some of the kids here to know that their quality of life will never get to a normal level. 

One day I was quietly sitting and listening to the conversation between parents. One dad was describing how he works in heating and air conditioning. People yell and scream at him when he comes to fix their furnace/air conditioner as if he, personally caused it to break.  He described how they would get furious that he took to long to get there, or it was going to cost money to fix.  He said that he tells them “listen, your biggest problem right now is that a machine isn’t working for you. I can fix the machine. There are things that are more upsetting in life like, my son can’t walk because of a disease.” 

Man, I guess that puts things in perspective. Always be kind. You never know what bigger issues are going on. As I sit and listen to heartbreaking story after heart breaking story. Ethan is kicking ass in the gym.

Today he rode a stationary bike. His cheeks were rosey when he came back from his PT session. He was proud of himself and is watching his hard work pay off in real time.

Ethan is doing the things he is supposed to do and things are finally going his way. We will keep it up. He did make me laugh and I did feel like I was looking in the mirror today when our roommates mom turned on her loud music during dinner. I had a similar look earlier in the day, right before I went for a walk BY MYSELF!