This post is Part One of a series in which I chronicle, in no particular order, things I’ve learned from Evelyn.

I’ve learned that I have so many biases and prejudices. I never would have believed that about myself, but having a daughter with special needs taught me how much I have to work on. I used to care way too much that strangers would notice that Evelyn has delays, speaks differently, walks differently – because deep down I was afraid different was not as good. Knowing Evelyn as a person taught me how small-minded I have always been.

I’ve learned that doctors know a fraction of a percent about the complexity of the body. Their opinions on genetic possibilities, prognoses, treatment plans are just that: opinions. Most doctors worth their salt are basing those opinions on lots of clinical experience and research, but frankly I’ve found that most doctors don’t stay up-to-date on the research related to rare disease or special needs (often from a lack of time, a lack of motivation, or because the disease is so rare, a lack of relevance).

I’ve learned nearly every lyric to songs from Daniel Tiger and Vampirina. And most of them have important life lessons I wish some adults would learn.

I’ve learned that judging that family in Target whose kid is just SO spoiled and gets whatever they want, or whose kid is singing some song at the top of their lungs and driving everybody bananas, or whose kid is immersed in a screen and ignoring everyone – judging that family says everything about me, and nothing about them. That kid might be getting what they want today because they have mito, and stress from throwing a fit might cause a permanent health setback. That kid might have apraxia, and may have just learned to sing that song. That kid might have SPD, and need a screen to help center them in a chaotic store. Whatever. Maybe they don’t. But you don’t know. And compassion and empathy go a lot farther in earning you good person points than judgment.

I’ve learned that many phrases I’ve used all my life hurt people during the most difficult times in their lives. “God never gives you more than you can handle,” “You’re such a good parent; I could never do that,” “I’m sure she’ll grow out of it,” “She doesn’t look sick,” “She looks normal to me,” “I don’t care if its a boy or a girl as long as it’s healthy.” If you haven’t learned this lesson yet, let me just tell you now: All of these phrases need to make a graceful exit out of your vocabulary today.

I’ve learned that I don’t know everything… or even close. I’m an educated woman with several degrees and a lifelong love of learning. But nothing could prepare me for all the lessons Evelyn would teach me. And I’m still learning every day.