September 5, 2020

September 5, 2020


Marlon is the most like Marlon today that he has been in a while.  The pain isn't so bad, his speech is more clear, a bit of a gleam in his eye, appetite, and so much more.

I wish we could just wipe our hands, say thanks for helping, go home and forget this ever happened.  I can pretend it is all over.

So bittersweet.


We just sat and watched a movie together and now he is drawing a dragon.  He hasn't been able to draw or even pick up a pencil in several weeks.  Both arms are moving, eating a snack, stopping to chat.  Oh this is the boy I know.

So while I keep telling myself to enjoy the calm before the storm I feel a sadness knowing it will get worse before it really gets better.


He enjoyed the feeling of the 'new' hair, laughing at the sensation saying he felt like he had a bowl on his head and if he turned the wrong way it would fall off.  He wanted to wash it and decided he likes the messy look.  So he walked to the shower, I helped him wash his hair and he even walked a bit more after, more walking than he has done in over 2 weeks

Right now we are in his favorite position.  I am leaning back on the bed and he is lying between my legs with his head resting on my chest and he has fallen asleep.


Enjoy what we have while we have it!


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