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Medical Parenting and Regret

Insights from a chat with another medical mama tonight:

👉🏻 We make the best decisions we can with the information we have. Sometimes we have medical studies and journals full of information and statistics. Sometimes we are trailblazers and all we truly know is our own kids. But we all do the best we can.

👉🏻 We try our best to balance the fragility of our kids lives with our desire to have them experience the world around them in a “normal” way. Sometimes it means that we take risks so they can participate. Sometimes it means that they miss out. Life for us is less of a merry-go-round and more of an off balanced teeter totter.

👉🏻 We can’t protect our kids from everything, even when we think we can. Even in a perfect school environment where nobody sends their snotty kids to school, kids are contagious before they show symptoms. Even if we pull AJ from school, his sister or his parents might bring germs home too.

👉🏻 We often want to blame others for unexpected outcomes, but in many cases it’s not truly anyone’s fault - and even though that’s really freaking hard to accept sometimes, it’s really important to learn.

👉🏻 Along with that — non medical parents, and parents who make decisions differently than we do typically just want what’s best for their kids too. I don’t want this to be a pro/anti vax post, but it’s a big parenting debate and makes a good example. People on both sides of the fence feel they are making the right decisions for their children, even if people on the other side of the fence think they’re wrong.

👉🏻 We feel judged for almost every decision we make. Even if nobody says a word, we can feel the judgment internally , “of course you should xyz, why would you do anything else?” And “I can’t believe you chose to xyz...”. Sometimes the judgment is real and spoken. Sometimes it’s all in our heads. Either way, it doesn’t serve us and we need to let it go.
Looking back at this list, it really (mostly) applies to all parents. Not just medical parents. But those risks are definitely bigger when you have a medically fragile kid under your wing.

More on our site at

#DownSyndrome #TheLuckyFew #HLHS #HypoplasticLeftHeartSyndrome #CongenitalHeartDefectDisease #CongenitalHeartDefectDisease #PediatricStroke #Stroke #Tracheostomy #subglotticstenosis


The Appointment Ritual

Got lots of #specialists ? Me too! To keep myself organized I chunk my appointments so I can get them done. This also allows me to double up on labs by copying whomever needs labs, that way they're seeing me in the same time frame, with the same test results. Most importantly, I have a ritual where I do something FUN after each appointment: buy a sparkly pen, walk to my favourite part of the city, stare at the lake, go to the steam room at the gym. I make sure that the appointment and its seriousness don't take over the rest of my day. It's also my way of celebrating the ability to do something other than be a patient.
#Wegeners #subglotticstenosis #Vasculitis