9/27

 After a couple of phone calls today, I am hoping that we may have made progress on some of our insurance claims. Not huge progress but progress is still progress so I will take it.

We are solidifying our trip for Ethan’s first “annual” heart catheterization and biopsy next month. It will be a month early but fingers crossed, we will continue to have good news.

Ethan has been quite upset with the current health care crisis. He hates that the people that worked so hard through the pandemic, are now losing their jobs. His plea is that if you have to go to the doctor or are around any healthcare worker in any capacity, please be kind to them. Thank them for coming to work. 

Ethan went to his Co-op today and we spent the entire car ride talking about the frustrations of politics, we discussed his beliefs and mine as well, even though they aren’t exactly the same.  It was a nice discussion, but I could tell he was dedicating more energy to being upset about the things he can’t change, than focusing on how to balance that frustration without driving yourself crazy.

The ruthless world of politics can suck you up like a tornado. It fuels itself on sucking your energy away and filling your brain space with negativity. Who can feel good with that heaviness 24/7?

Dory had it right….sometimes you have to “just keep swimming…”

I had an insightful conversation today with a co-worker regarding “it can always be worse.” She shared that our situation is their families “worse”. This family is going through some medically traumatic and uncertain health issues. As she explained the hardships they faced last week she kept going back to comparing it to our medical situation. “It could be worse”.

It’s hard to compare medical situations with children. If your child is sick, it is like your sun and moon ceasing to exist in your own world. It is devastating, scary and leaves many scars. There is a level of stress that elevates something simple like the flu, to threat level midnight, but with many medical ailments with varying degrees. It’s all stressful.

She apologized for our family being their “worse”. I was not offended in the least (it takes A LOT more than that). I shared with her that we had a “worse”. There is a set of parents that I think about daily. Their son was like Ethan in many ways.

He finally got his heart  transplant. Everyday was a struggle. He didn’t regain really thrive afterward, started having seizures and kidney issues and eventually passed. They never really had a conversation with him afterward when he was fully conscious as himself. He was young. He is my “worse”. I was questioned if our donor family was my “worse”. The answer is I don’t know enough about that situation. Maybe? I hate what they had to go through. But maybe their decision was a blessing to them? Also, I would have to be glad that the choice of donation with my child’s organs were helping another family. We all likely have a “worst” Case  scenario we compare our lives to. It offers perspective and hopefully reminds us to have empathy for one another.