To the Medical Mama: I now Understand
How many times have I watched from a distance, mostly from behind a screen, as special needs parents spent weeks or even months in the hospital with their child, and I’ve thought, “gosh, that’s got to be hard.”
I had a limited understanding of how difficult an ordeal like that could be because my 16 year old son Luke has been extremely healthy for many years; healthy until last year when we spent 6 weeks in ICU with him after his shunt malfunctioned and then became infected after a new valve was placed.
Now I know how hard it is; I know on a personal level which is very different than knowing from behind a screen.
Now I’m aware that the experience includes trying to determine how a non-verbal child is feeling or reacting to a particular treatment or medication.
It includes stiff muscles from sedation and resting on hospital cots and sleep deprivation due to vital checks and rounds.
It involves depleting the savings account because of days missed at work and stress related problems and nutritional deficiencies because hospital meal options primarily consist of Taco Bell or Pizza Hut.
It’s depression and PTSD and loneliness and marital disconnect and siblings who misbehave because they need attention too and a house that hasn’t been cleaned in a month and rotting fruit because of absentee parents and piles of laundry and bills & vehicles that require servicing due to excessive driving back and forth and exhaustion on a level where in your quietest moments you wonder if you might die.
I couldn’t personally speak into the medical mom struggle before this journey because it wasn’t my story, but it is now, and I will lend my voice, honestly and vulnerably to the conversation in order to bring awareness to the silent warriors tucked away; those caregivers rocking themselves into a disrupted sleep after they pen updates for the masses; those hiding behind cords & beeping machines & very sick children.
I see you.
May we all see you, and then may our actions speak louder than words.
Written by Jess, Ronne
Jess Ronne is an author, speaker, podcast host, and caregiver advocate. She is founder and executive director of The Lucas Project—a non-profit dedicated to providing recognition, resources, and respite for special needs families. She and her husband Ryan live in Tennessee with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga she can be found at www.jessplusthemess.com or www.thelucasproject.org. You can also find her on FB, Instagram, Pinterest and Twitter. Her podcast can be found on Anchor FM.
Her second book, Blended with Grit and Grace is arriving June 15, 2021.
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