The Hardest Aspects of Our Children's Diagnoses

"Not having a diagnosis."

—@brandy_bsaunders, @ashlea_gibson, @ashnik517

"The unknown."

—@tammcsmith, @ktderoads, @ourmainehomesteal, @shan_real_tor, @ryanthemagnificentws, @then_they_were_four

"People praying for a I'm miraculous healing, but the undertone is “she needs to be fixed.""

—@chandra_ardelle

"Worrying about what will happen if I die first."

—@chandra_ardelle

"People ASSUMING how I feel about any given situation."

—@chandra_ardelle

"Not knowing if she's going to live or for how long."

—@chandra_ardelle

"Knowing that their life will be short, and I will outlive them."

—@brandy_bsaunders

"20+ years of changing diapers lol!"

—@brandy_bsaunders

"The unknown. Coming to terms with not controlling and perfecting and surrendering."

—@epilepsywarriormama

"His screaming and crying, we can't figure out why. It's crazy making!"

—@theos_village

"Knowing that she is more likely to be a target for bullies. It shatters my heart."

—@lexie_be_cheesin

"The anxiety and worry."

—@emilyyoung3

"Surgeries! Subjecting my sweet baby to pain."

—@Ihimmetoglu

"Not being able to drive my children alone-always have to have an adult in the back."

—@klovestone

"Dealing with medical ableism."

—@klovestone

"The unexpected new challenges."

—@smallstepsbigcity

"It's terminal: so any decline in health hurts. Is it temporary or is it signs of what's coming?"

—@katiebpeterson

"When well intentioned friends say hurtful ableist things that are hard to forget."

—@vaniadeeney

 "She wears her disability partially on her face, we can never hide it."

—@vaniadeeney

"People's facial reactions when they first meet her as a baby."

—@vaniadeeney

"I can't explain it concisely to others."

—@vaniadeeney

"Not knowing her thoughts."

—@vaniadeeney

"Knowing she will need a caregiver for the rest of her life, most likely."

—@vaniadeeney

"Knowing he will never be cured."

—@debnielsen7387

"Grieving the life I thought I'd have and coming to terms with my new normal."

—@brittanymilstein

"Watching my friend’s children meet milestones while my son is further behind."

—@brittanymilstein

"That there’s still so much we don't know even with a diagnosis."

—@loeyjessica_

"The wondering (real worrying) about what his future holds/ what that will entail."

—@ktderoads

"Never knowing when the next seizure is coming."

—@amfisher1126

"Just when I figure out a normal life decides to flip on its head."

—@shaylee.shaybay2008

"So as a young adult that was diagnosed at 12, for me the hardest issue is the curveballs."

—@shaylee.shaybay2008

"People not understanding the scale of blindness and low vision and thinking cause he's cute it will be okay."

—@lloveathome

 "That it's so rare that no one has any idea how to help so it's up to us to figure it all out."

—@mywibblywobblywonder

"Her poor cognition."

—@andrea.t.belo

"Never ending vigilance and anticipation in every facet of my life."

—@lifeintechnicolorgray

"Waiting."

—@wine_in_a_mountain_town

"He doesn't sleep I face a lifetime of not sleeping which adds up and no one really cares."

—@lalablahblah

"Not having any idea what the future will be like for her."

 

—@kltashuk

"Mentally preparing for his inevitable decline."

—@cathsheahoff

"Roller coaster of progress. Some weeks things are great, other times we're going backwards."

—@lorenecm

"Always being on high alert for changes in symptoms, or that a crying fit is more than a fussy baby."

—@sarah_harris_insta

"Knowing that I was the carrier and passed it to him..."

—@hopefulmandm

"Inability to walk."

—@cristen.moll

"Seeing him in pain from medical procedures and not knowing if he understands why it needs to be done."

—@nahnancy

"The future bullying, we know is to come."

—@the_fourvaths

"Him being nonverbal."

—@colleener

"The constant fear I'll have to say goodbye."

—@maevevalentina

"Knowing if she is able to/chooses to have kids, she'll be in the shoes I'm in today."

—@kimberlyy.ana

"Knowing one day she'll be dealing with it on her own."

—@kimberlyy.ana

"Knowing that I'll likely outlive her."

—@emilyvmilligan

"Loss of control, their health could change daily, knowing you won't see them grow up."

—@hilfrank

"That he can't and may never be able to speak."

—@singsavana

"Making sure people don't pre-judge and just listen and learn before making up their minds about him."

—@keyamberp

"Communication (on my end). Always trying to figure out what she's trying to say."

—@_heychurch

"Now it's my worries of what his adult life will look like and what delays will he have!"

—@cdrade2384

"Initially it was the unknown and all the appointments and surgeries!"

—@cdrade2384

"Knowing that there was nothing we could do to help him and letting him go."

—@lifewithozzie

"Trying to get people to see passed my son's diagnosis and understand his potential."

 

—@camierodan

"That he will never be independent."

—@mamamancao

"That I question every beautiful smile or laugh as a seizure. It robs so much joy."

—@reneejustine

"It's seemingly invisible for now so people don't take it seriously."

—@aholt.haus

"Knowing that she will never “grow up” like other kids. She will be dependent on me for life."

—@lesley_ab

"That there are constantly nurses in my home at night, I miss privacy."

—@klbhatnagar

"Hyper vigilance. Always waiting for the next emergency and analyzing every symptom."

—@joyfulblondie

"Letting go of what you thought their life would be like and being scared for what it might."

—@bethled

"Not knowing when and if he will ever meet milestones."

—@eleanor.a.dean

"Continually changing my expectations of what I thought parenthood would be."

—@_alexandriaj91

"The uncertainty of the future. We don't know what to expect or even how long we have him."

—@our.life.upsidedown

"The uncertainty."

—@livingloudwithliam

"Realizing he'll be with me for the rest of my life. And making sure he's taking care of before I pass away."

—@corrissa_osuna