Our Most Joyous Moments with Our Disabled Children

February 2022 | Question of the Month
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Our most joyous moments with our disabled children

“You’ll experience highs and lows and joys and sadness that a lot of people will never get to.” —Orley Bills, LCSW

This statement from episode 33 sums up the responses to this question to a tee. As I read through each tender experience, it really hit me that so much of what made these joyous was the darkness that proceeded or surrounded it. 

Really hard things can be the catalyst for bright, shining moments full of triumph and love. 
Simple, yet profound. 

There can be a whole lot of struggle and pain that comes along with medical complexities and disabilities, but the depth of these types of experiences are unlike any other. What a privilege to be here for all of it.

Thank you to each parent that vulnerably contributed to this month’s question! 

“When he finally started smiling at 6 months old!”

—@abbiexmerrill

“Seeing the MRI results after life-saving surgery, confirming that she’s okay ❤️.”

—@akaverdugo

"Nora's first-ever smile after her shunt was placed. She was just so happy to be relieved of it!"

—@karley_L_h

"Getting confirmation that the infusions were working for my son, who has osteogenesis imperfecta."

—@kelschiara

“The first time my daughter called me ‘Mamma’ 💖.”

—@ashnik517

"Taking her to the beach and seeing her dip her toes into the water."

—@katiebpeterson

“When she started making eye contact and interacting with us after being on keto for her seizures ❤️.”

—@morganrockey94

"All the skin-to-skin in the NICU. I hated the NICU days but treasured the time we had together."

—@freyasluckyarm

"When my son was two, he learned to drive a power wheelchair using only his head."

—@debnielson7387

"Finally getting his PICC line out after two years!"

—@strengtheningbyfire

"Hearing her cry when she was born."

—@miraculouslycomplexmaddie

"When my son ate a cheese ball after not being able to eat through his mouth for 18 months."

—@tammcsmith

"Every time she manages to smile, despite her epilepsy. It's always a joyous moment!"

—@madhurakatre

"When she latched after being transferred away from me for 24 hours!"

—@lovelyladyl19

"Just last week, we went to our first 'real/public' outing. She's three-and-a-half-years-old, and I just sobbed."

—@_alexandriaj91

"When I realized I was going home with a baby after being told to not expect anything during my pregnancy."

—@kelsey_l12

"Taking him off oxygen and holding him close as we swam in a seasonal creek."

—@bornbyariver

"Their big brother meeting them at home after only seeing them twice in a span of five months."

—@oliver.wyatt.ataleoftoughtwins

“After Arden got his G-tube and we could finally kiss his tube-free and tape-free face!! 💛🙏”

—@itsalockhartlife

“I think it was the moment I let go of all expectations and just let us live in the moment. Also, after searching and searching for a bike or tricycle that would work and then seeing Nora riding her scooter for the first time. She was so proud and happy! My little scooter master ❤️.”

 

—@emilyyoung3

"About a month after our son's lip and nose surgeries, we were cleared to stop the nose stents. At more than 8-months-old, we got to see his sweet, beautiful face all day and all night. He was so cute!! For the first time since he was born, we had a baby without tapes, tubes, and hooks. We had seen his face before, but briefly and his face was all red and puffy."

—@ktderoads

"The day we could be together as a family of 6 when she was four-months-old."

—@sophiaclong

"I can't think of one specific moment, but we love her bedtime giggles!!"

—@lifesgifts2022

“When they placed her on my chest and she became a person, not just a diagnosis ❤️.”

—@myincredibleivy

"When my daughter, who has a speech delay, autism, and CP, said, 'I love you, Mommy!' unprompted."

—@cbowens525

"The first time he signed 'I love you' in ASL."

—@thegarg_family

"His first steps at two-and-a-half-years-old!"

—@elyse_bakker

"When he got his glasses and transition lenses. He could finally enjoy the outdoors :)."

—@loeyjessica_

Ep. 90: Living with Sleep Deprivation w/ Jill Arneson Underslept https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-4-12/4d5d4527-3978-3e8d-d2a1-f3f7f9ce8d4b.mp3

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68: Dipping My Toes into Educational Advocacy

 

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