Samsmom: Life, Joy, Loss and Loving your Mitochondria

Fighting the Good Fight

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Hschichie

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Every evening…..

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.

5 responses to “Fighting the Good Fight”

  1. Deana Avatar
    Deana

    Here's to all the daddy's out there. I fully believe Max wouldn't have pulled through without my husband roaring in his ear while we were in the PICU…yes a raspy whispering ROAR every few hours. He would lean over and say, roar buddy…you can make it…show them how strong you are. He would do that every day for a month. While Max was seizing non-stop, while they put him into a medicine induced coma, while he was intubated, and once he coughed the tube out. They have a very different relationship, than I have with Max. A tough one…they are both strong. They go fast, and play hard, and they laugh and giggle, and they roar. Beautiful post Heather! Let's hear it for the dads!

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  2. Tracy Avatar
    Tracy

    so sweet and simple!

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  3. Maria Hopfgarten Avatar
    Maria Hopfgarten

    I love how you describe your bed time routine, and the most important things are the final words about the fighting – every night. It feels so familiar to us.Very nicely put! – Maria.

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  4. terena Avatar
    terena

    The love you give her will help her keep fighting that fight.

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  5. breemunger Avatar
    breemunger

    Sam has a good Daddy and Mommy!

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Hello,

I’m Heather

Welcome to Samsmom and over 15 years of stories about love, loss, grief and the process of moving forward. It’s not always pretty here, but it’s honest. I’m a writer, a fund raiser, rare disease advocate, Mom of two Littles who are no longer here, Wife of Hubs, Aunt to the Phews, daughter, friend and unapologetically me.

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