Evelyn is four. You no longer tell me that she is a late bloomer or that she will catch up. You know that I don’t believe that you believe that. Evelyn has special needs. You know that. Her special needs make you uncomfortable even though you do your best to pretend that they don’t. It pains you to know that I know that you are feeling uncomfortable. Your words are bright and tend to avoid the topic of Evelyn. But your eyes tell me that you feel sorry for Evelyn. You feel sorry for me. What you don’t say, says so much.
I am not criticizing you. I know the awkwardness that you feel is born out of compassion. It is born out of your desire to be polite. You’re silent because you don’t want to say the wrong thing and you don’t know what the wrong thing is. You have questions that die on your lips because you don’t want to hurt my feelings.
You picture my life, Evelyn’s life, the life of our entire family one way. But really it is another way entirely.
You see Evelyn as her disability–she IS autistic, she IS non verbal, she IS developmentally delayed, etc. I see Evelyn as my child that HAS autism, developmental disabilites, etc. What is so hard for you and so easy for me to see is Evelyn.
You don’t see that Evelyn has a great sense of humor, that she cuddles in and gives the best hugs. You don’t know that Evelyn has a personality that is so much bigger than her disability because it is so hard to see around a person’s disability unless you’re really looking. You’re focusing on all the ways that Evelyn is different than your child–different than you. You see all the things that she is not doing. And sometimes I see those things too. And sometimes, yes, there is a voice in my head that wonders what could have been. But I tell that voice to zip it because oh my goodness…look who Evelyn IS! Look at the wonderful things Evelyn is doing! And this might be hard for you to believe. But it is true. I don’t want that hypothetical Evelyn. I want THIS Evelyn. The one I love everyday. I want this Evelyn–exactly the way she is. Disabilities and all. I want this Evelyn–the one that loves to sit in my lap and cracks up laughing for no reason. If you weren’t afraid to get to know Evelyn, you would see how very wonderful the real Evelyn is to know.
And while you are getting to know Evelyn, it would dawn on you that our life isn’t anything like what you thought it is. Sure, we spend more time in doctors’ offices, at therapy, etc. than the average family. And yes, we have challenges unique to our family. But at the end of the day, we are just another family doing the best we can to love each other the best we can. Our life does not center around Evelyn’s disability. We don’t mourn Evelyn’s disability. We don’t ignore it or pretend that Evelyn is just like everyone else. Evelyn and her disabilities are a wonderful part of our family–and I stress “part” because there is much more to us than Evelyn and her disabilities.
The only thing you can do to hurt our feelings is assume that we wish Evelyn was different–to assume that Evelyn isn’t everything we ever wanted in a daughter. Sure she isn’t what we expected but sooner or later all parents realize that children almost never are. and we love our children for the very unexpected people they turn out to be. So ask us anything. And please don’t feel mortified when your children ask those blunt and honest questions that only children ask, like,”why doesn’t she talk?” Kids have to understand Evelyn in order to try to include her–just like adults need to understand our family in order to include us. Although we understand it, there is nothing worse than being pitied and/or avoided.
We know that we aren’t going to be around forever and we are desperately trying to carve out a space for Evelyn in a world that aknowledges and appreciates her as an individual that happens to have disabilities not just a disabled person.