I heard you are having a hard time with this all.
And now I know after speaking to you.
I know that it makes you question everything that you ever believed to be true. How can a man (and woman) who committed their entire lives to the greater community, like yourselves, have such curses on their home (literally and figuratively)?
My parents home burned down in the early 2000’s. And my brother and I have had tough roads.
I too am grappling with this, but Mom tells me the hardest for you was seeing Jacob, without hair. It was a moment for you and you worry about how he is feeling about it.
I get it.
So let me alleviate that one thing. I can do that for you as you have always tried to alleviate things for me. Coming to pick me off the floor, flooded in tears.
Up until now, I’ve answered this hair question (through mom) that he has yet to look in a mirror. It’s pretty remarkable and not obvious to us, adults.
When your 5, why do you have reason to look in the mirror? Or maybe that’s a boy thing? I don’t have any girls, so maybe this was not the case when raising me. I recall liking to dance in mirrors…so maybe this is a boy thing? Or maybe it’s a Jacob thing? But either way he has no interests in such vain pursuits. None.
It has no purpose for him. Unlike watching inappropriate movies of battles. That he derives great pleasure from!
The only reason you have to look in a mirror is for others. Looks only have value if you have a a definition of beauty. Something to align to. It reminds me when you once told me that skin whiteners were the number one selling beauty product in Asia. Remember for my paper on macroeconomics? Probably still is the number one selling product. But that isn’t because having whiter skin helps them in any strategic way (or sadly maybe it does). At its core its about aligning our perceptions or their perceptions of our perceptions of what constitutes “beauty.”
So Jacob has no reason to look in a mirror and doesn’t.
I parked his stroller in front of a mirror. Not just a mirror, but an over 20 feet fall mirror. I wasn’t even thinking nor saw it. I was just thinking of getting the stroller closest to Jacob so he had to walk the least amount of steps with his tubes.
And he looked. It was hard not to. It was right in front of him.
He asked “Am I getting bald?” And a few of us who were witness said “your getting handsomer.”
And that was it. He went back to playing batman.
His metric of what is beauty if built on perceptions. We get to decide what those perceptions are.
Handsome. That is what we decided.
So your fear has happened and again Jacob came out victorious. Again and again he takes his situation in stride. Again and again he lays in a confined hospital room for 12 hours days and never asks why he can’t go outside.
He complains little. He feels crappy, but complains little. He is amazing.
I know “trust” right now is hard, but I know one thing I know is you trust me. As I do in you. So I need you to trust. I need you to remember the contract we wrote the other day, not the words, but the color of it. I need you all in. Not just in doing stuff, but believing in stuff. Believe in Jacob. Believe in me.
So moving….sending hugs & prayers
And than you for the food!! It just arrived as I saw this
Abby, I read your blog every day.
I want to say something “profound” but truly what can one say.
I’m praying for him….
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