After Samantha has been cath’d, changed into her pj’s, the oxygen turned on, the meds delivered, her tube site cleaned, formula prepared and the feeding pump primed and ready for the night….
…..her Daddy leans down, kisses her head and says “Good night Samantha, keep fighting the good fight.”
This is part of our routine….just as important as oxygen, just as vital as seizure meds….keep fighting the good fight.
Sometimes (not often but sometimes!) he will forget and just kiss her head. “You have to tell her,” I’ll say. “She can’t go to bed until you tell her.” He will then give her double kiss and remind of her nightly task. Between you and me, I think he forgets on purpose just to kiss her cute little forehead again.
Yep….just as important as oxygen.