What We Want the World to Know About Medically-Complex Parenting

"Parenting just looks different. Our kids aren't status quo, and as a result, neither is our parenting. I've been given a hard time about my son doing a lot of floor time...even though it's doc's orders."

—@_katiesonia_

"To those close to us: It's ok to be curious/confused. But, it's NOT ok to second-guess our parenting."

—@chandra_adelle

"Most of us lose the ability to be spontaneous or carefree. Life is planned around the medical needs of our child."

—@adevereux55

"Just believe us. Why would we make up these struggles?"

—@sunflowers_sea

"It never ends."

—@debnielsen7387

"It's a whole different type of parenting. We live by the day and the unknown. We make the best of it and keep going. ❤"

—@shortbutfeisty

"Sometimes it can be very hard to connect with moms who don't have medically complex kids."

—@myeverydayevan

"We love our kids more than anything, even when we're exhausted and discouraged."

—@joyfulblondie

"It's hard but it makes all the milestones so worth it. ❤"

—@kris10_ann

"It can be isolating, so please don't forget to include us and invite us to things. ❤"

—@mama.pod

"Our children are unique, but they are still children with their own views, desires, and dreams."

—@brianna.alcox

"It's even harder than it looks."

—@libby.525

"Motherhood is like running a marathon you never trained for. Rare motherhood is like running that marathon, but you're blindfolded."

—@ad_ra

"This pandemic, for those taking it seriously, is a great taste of what it is like to be a medically fragile/rare disease parent:

 


It came out of nowhere and rocked your world.
You are isolated and often feel alone in your fight.
You live in daily fear of your loved ones getting seriously ill/dying from something you know is very possible, or even likely, and rely on the hard work and honesty of others to keep them safe.
You are your children's entire support system (e.g. teachers, therapists, etc) with very little training.
Information is scarce and changes frequently, sometimes for the better and sometimes for the worse.
The institutions you thought/hoped were there to protect the vulnerable fail you and your family repeatedly.
The crazy amount of handwashing, hand sanitizer, and vigilance to signs of any possible illness.
The feeling that the struggle will never end and when it does your world will never be the same.
Not knowing how you will get out of bed some days because of the utter weight of it all. But you do it anyway because your family is your everything."

—Corey C.