I think about all the hellish mornings spent trying to be the first one to the shower to reduce the amount of hair found in the drain at the hospital. Just wanting a clean-ish shower. Worrying that if I wasn’t the first person, the air could be contaminated as I removed my mask for 15 minutes a day to clean myself. Worrying I might bring Covid back to my healing kid.
My morning now is so much better. I told Avery for years I wanted a remote job for my sanity. I feel like I have hit the jackpot. I enjoy work. I enjoy it even more with a beautiful and peaceful office. I am so grateful.
Ethan made a YouTube video where he shared his feelings about how things have gone for him the past 6 years. His constant stress about his health, the constant worry he isn’t as far along as he would like to be….
While I don’t love his excessive use of the F word, he expressed how he feels and the challenges he has faced from his perspective.
https://youtu.be/hj4Usa_yxTk?is=1KPVGei12-we_tFs
He recognizes (I think therapy helped a little) his anger, his attitude and I do think he tries to be a good person everyday. I do feel like some days are better than others for him.
I do think he is worried he will fail. I feels let down by services and that insurance puts up barriers at the drop of a hat. We (mostly me) navigate those the best we can. It is exhausting some days. My advice continues to be “find your joy.”
I think getting him moved into his place and more adulting we will see him grow despite his worries. He is a fighter and will continue to show his “hell” who is boss!
I did feel sad watching the video. He doesn’t see the progress he has made. He doesn’t understand the depth of love his family and friends have showered him with. He doesn’t see how he has grown!
He is focused on the things he can’t control and it is hard to break that cycle. He is feeling distraught with the Ssi debacle. He is frustrated that he looks normal but he still has some significant symptoms that he quietly struggles through.
Transplant life is no joke. He has said all along if he needed another heart transplant he would say NO! It was heartwarming at his cardiology appointment when this was brought up, he said he would consider it. Woah!
I think he did a great job making himself vulnerable. That is hard to do. Everyday he shows a little glimmer of improvement, whether it is a half smile, a joke, a shared laugh or one of the dogs being silly. He is gaining momentum towards normalcy.
If you could take a moment and watch or even “like” his video, I know he would appreciate it.
Always a beautiful sunset. It’s almost as pretty as I am. Ha!
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