10/3/24

Remember Jacob? He was the kid who had his second transplant and it followed the same path as Ethan’s, going terribly wrong.

Jacob is learning to walk again. He has minimal use of his fingers after his stroke. He keeps working on gaining movement. 

His mom and I have talked regularly as she is trying to encourage him to be self sufficient. He is 17 I believe and wants to be independent like a “regular” kid.

He collapsed yesterday in what they thought was a cardiac event, but was actually a seizure. Seizures are scary because the person turns so blue. Purple really. Their eyes are fixed. It is a picture of trauma that burns its way into your brain.

This poor kid is 17 and had to endure this. I am so glad he has a loving and supportive family. I have reached out to his mom to offer support.

It got me thinking about how when you have a child, you have visions of who they will be when they grow up. Every parent wants a well adjusted kid that can support themselves, have a loving partner or children if they choose. Every parent wants their kid to be successful and NEVER endure hardship (that is because parents can also be delusional because this is impossible).

Ethan’s path wasn’t really in my vision. I didn’t have visions of him in a hospital fighting for his life during a pandemic. Not even once. I know, that is hard to believe.

We are fortunate enough that Ethan is as independent as he is. It has been a long road. My current vision for Ethan is simple. Finding joy in life. Find your joy and continue moving forward.

Jacob also has a long road. I am hoping that he is able to recover and find a way to be able to overcome all the obstacles placed in front of him.

It also led me to a place of gratefulness. I am so grateful our path, as difficult and traumatic as it was/is it could have been much worse. Gratefulness is a powerful tool in overcoming any obstacle.

No one really talks about the grief that happens when your child has endured hardship. I went through the stages of grief. Jacob’s mom shared that she was angry. She was angry that he had to go through one more thing. Who wouldn’t be? It’s ok to be mad. Transplant life is not for the weak.

On a separate, less heavy topic, I made some white chili in the crockpot. I used oregano and peppers from my plants. This is not something I have made in several years so we will see how it turns out. Ethan and Paul are my guinea pigs. Luckily they like just about everything I make, so they are easy to please.

They really enjoyed it and I get to keep making this recipe. Yay!

Avery shared a story she and two others were featured in at SUNY Brockport. It was about her research project this summer using magnets to filter drinking water. She is doing great things in science. Go Avery!!!!

I think sleeping with the fan in the window is goofing up my allergies. I keep getting headaches. I pop a Claritin and hope for the best. The fan stays in the window. It makes for a wonderful sleeping environment.

Have a good night and a pleasant tomorrow.