❤️ 5/13

“I wish I had a normal life.” This is the statement Ethan made today. It makes me a little jealous of our former lives. It was a simpler time 2 years ago. But this is our life now. We have lots of appointments. We are juggling a lot of balls in the air. It is what it is.

Today Ethan had dialysis, then eye appointment, then tutoring, then PT, after I dropped Ethan off at PT, I took Avery to get her 1 st covid shot. 

It’s a whirl wind for sure. It will get better.

Ethan has been feeling worried for his upcoming tests. He is afraid he will be admitted or they will find something bad. He has an overwhelming sense of doom for these appointments.  We are working through it. It is hard to hear your kids struggling mentally and physically.

He is really worried for the kidney transplant evaluation. He is so worried he will have the same trajectory of a recovery similar to his heart transplant. There are no comforting words to offer from my mouth. “Yeah, you have legitimate concerns.” That is all I could bring myself to say.....because I am worried about it too. Truth is, neither one of us want to go through another disaster after surgery anything like the heart transplant. 

Then I sit there and wonder....did I say the right thing? Am I being supportive enough? I really don’t know what I am doing, I am just trying to preserve his attitude and determination. I try to do it in a way that I think I would perceive well.....so hopefully that will work for him too.

I am still in the “moving forward” mode. If we get this step done, we can move on to that step....no time to process much, just getting through the day so I can get through tomorrow.

I notice Ethan has a more difficult time when he has a lot of appointments. I am trying to keep appointments to a minimum but sometimes several appointments on one day has to be done.

Today Ethan and I had to each lunch out at a restaurant. It was his first time eating in a restaurant since 2019. It was only like my second or third time but still. We are living cautiously.

I got a text from our neighbor this morning letting me know that the covid vaccine has now been approved for Avery’s age bracket. I was so thankful. I knew it was close but wasn’t paying attention to this information. When I received her text, I immediately went online and booked Avery’s appointments. She received her first vaccine today. 

Of course when  booked the appointment I booked it for the closest place to our house. When I got the confirmation email, it somehow booked at a pharmacy in North Chili. The old bait and switch. There is a strong chance I may have said a bad word.

I didn’t have time to figure out how to reschedule so we just drive a little farther than we needed to. Ugh! At least she got it. One down, one to go.

A bright spot for me today was eating dinner outside. Including the dogs and rabbit. It was so nice out. Little snippets of joy. Laughing at the rabbit hopping around having the time of his life with his ears flopping all over. Hearing Avery squeal about “look at how cute he is.” These are the moments I want more of.

Tomorrow will be a better day for Ethan. He has minimal appointments and will actually have a minute to himself. He is looking forward to attending cars and coffee this weekend. Life is better when you have things to look forward to.