...I watched them dance. MY daughter, holding HER daughter, swirling and tilting and backing and tipping in a syncopated rhythm that confused the pain Clara was feeling. Sweet sick little baby, comforted and distracted from the pain that was keeping her from sleep, Clara relaxed as her mommy hummed or sang quietly in that beautiful voice God gave her the very lullabies I had sung to her at bedtime - so long ago that I wouldn't think she remembered - and danced her into peaceful sleep...for a little awhile.
...the beeping and whirring of continuous feeds and IV machines! 10 minute warning beeps that the machine would be beeping again when the medication was complete. Beeps to warn of beeps. Maddening! This is her world of sounds. Endless beeps, door creaks just as she falls asleep, hushed nurses' voices (or not so hushed) offering helpful (or not so helpful) words that keep you and her from sleeping, babies and toddlers crying out on either side of her room, "Mommy, don't go!" or "Go away! Go away! You're hurting me!" Somehow the sweet melodies from Bach or Brahms on the mobile just didn't cut through the strangeness of the other sounds in this baby's world.
...my daughter feeding her child through a tube. Counting out ml of breast milk or formula or medications in a syringe that she inserted carefully through an NG tube to keep her baby growing. Counting every thousandth of a kilogram she gained as a victory.
...crying as I watched her pleading with doctors on rounds to hold onto even the smallest of mother/daughter privileges, like breastfeeding her baby. Wanting so hard to have just a little of the normalcy of a baby's life in the midst of the bizarre and nightmarish reality of their own.
...the interaction of my daughter and nurses who have become friends, confidantes, sweet relief, and sometimes great annoyances (those were rare). Watching her jump up and hug a passing favorite nurse, squeezing in a quick update on the floor's favorite baby. Good nurses are angels on earth.
...discarding every toy/blanket/pacifier that dropped on the floor. Caution. Caution. Caution.
...the smell of antiseptic hand gel. I actually missed the dispensers immediately upon leaving the hospital, looking for them at every turn at the airport, my hands feeling so dirty after days of pumping gel into them every time I walked through a door of the hospital.
...mostly I will remember, forever, the look of total exhaustion on an anemic child's face blended seamlessly with total joy at the sight of her daddy or mommy when they spoke to her. The obvious toughness and strength of will in one so young, to endure what she has been handed and bloom where she is planted. She is a bright purple blossom, blooming sweet aroma and taking the breath away from all who pass her way. She is her Mimi's favorite flower. I love her. I always will.
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Thank you so much for this honest, uplifting description. I'm sitting here crying, thinking of how thankful I am that you were able to be there and experience that, so sorrowful thinking that this is our dear ones' reality right now. Love, and thank you...
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