What Happens When?
I spent an intense morning with my son Luke at the eye doctor.
Honestly, we’ve been frequenting doctor’s offices most days. Yesterday was PT for Ryan my husband, today, eye doctor for Luke, tomorrow and Friday PT for Ryan, Saturday, family doctor for a new wheelchair for Luke…
This is life for special needs families.
I made this appointment months ago…before Ryan had committed to his new surgery date in Feb…before when the original date was Jan 6 but then Luke was still in PICU and so we rearranged our schedules.
Today – 8:30 a.m. Feb 25, 2020.
Five days post op for Luke’s father who usually joins me on these exhausting excursions because it’s hard.
But Ryan couldn’t join today with his arm in a brace, and I bribed my oldest daughter Mya to help. Bribed her with the promise of Starbucks.
She agreed because that’s the kind of person she is. A lover of people and a lover of hot chocolate.
At fifteen years old, Luke hates almost everything out of his ordinary.
“GO TO SCHOOL!” was heard loud and clear…repeatedly…during our time spent in the serene waiting room added with the ants in his pants which resulted in a loud “GO WALK!” to the cacophony of chaos as mothers quickly shielded their children from his outstretched, unstable movements which threatened to grab or lick or stumble headfirst into their small toddler’s bosom.
What happens?
I asked myself….my blood pressure rising and heart palpitations quickening with each high pitched scream as Mya and I stared at each other with helpless looks as we tried to wrangle our big man child back into his stroller.
What happens when he becomes too big, and I can no longer physically restrain him?
What happens when he can’t go out in public because he might cause harm to another person?
What happens when my mental stability is hinging on instability?
What happens when his iPad isn’t interesting to him anymore?
What happens if he needs a diaper change and there’s nowhere to change him?
We were able to calm his anxious soul today quite by accident.
The nurse played classical music from a contraption with green blinking lights (price tag probably $5000) to get an idea of vision capacity.
He loved it and relaxed.
I asked if we could keep playing the song on repeat for the remainder of the visit. She agreed and patted his knee “it’s ok buddy, it’ll be ok.” She was looking at me.
It’s okay is what happens.
Mercy happens.
Compassion happens.
Occasionally someone really sees us…that’s what happens.
Hot chocolate and strong coffee happens.
Moment by moment as we “just keep livin”…
That’s what happens.
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
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