The Hardest Aspects of Our Children's Diagnoses

September 2021 | Question of the Month
a couple leaning against each other

The answers to this one spilled in.

And a lot of them are pretty heavy. The unknown. The fear. The pain. Knowing you will outlive your child. The list goes on.
It’s hard, it’s really freaking hard. 

Whenever I admit to that, I feel an urgency to proclaim again and again and again: it isn’t our children who are hard. They are not a burden. They are love. They are what get us through. 

It’s muddled, it’s confusing, and probably something that no one outside of our reality will ever completely understand. If you know, you know. 
Reading through the answers on this one, it’s clear that most of the pain we feel, comes from the deep and profound love we have for our children as their parents. Again, it’s all muddled up.

Of course, there are many moments of joy and peace, and our lives are not something to be pitied. But pausing to recognize and lean into the hard allows us to fully embrace the good, too. So, get ready to lean in. 🧡

**S/O to all those who trusted me with their answers to this tough question. Your vulnerability strengthens our community. 

"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.""


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


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


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


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


"20+ years of changing diapers lol!"


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


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


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


"The anxiety and worry."


"Surgeries! Subjecting my sweet baby to pain."


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


"Dealing with medical ableism."


"The unexpected new challenges."


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


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


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


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


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


"Not knowing her thoughts."


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


"Knowing he will never be cured."


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


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


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


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


"Never knowing when the next seizure is coming."


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


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


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


 "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."


"Her poor cognition."


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




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


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



"Mentally preparing for his inevitable decline."


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


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


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


"Inability to walk."


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


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


"Him being nonverbal."


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


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


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


"Knowing that I'll likely outlive her."


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


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


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


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


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


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


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


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



"That he will never be independent."


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


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


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


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


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


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


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


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


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


"The uncertainty."


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


Ep. 107: Season 6 Finale episode w/ Brittany season 6 finale


Hex Code

68: Dipping My Toes into Educational Advocacy