I know

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.

7 thoughts on “I know

  1. Beth, I can only imagine what you go through on a day to day basis and you’re so right about people not understanding, I know I don’t because I don’t live it. When you said “I want THIS Evelyn. The one I love everyday.”, I started getting all choked up. I don’t see how people treat you… or her… because I am not around but you love your daughter and do what you think is best for her and that’s all that matters. ❤

  2. I know how it feels to worry about your childs future and when people look at you or you child differently. I grew up with a learning disability as a child and was treated differently. Evelyn is getting the best care possible and is in a loving home. Even though I don’t know Evelyn as much as I would like to I am sure she is happy and well loved by all the know her. As a parent you can only accept and love your child for the unique and special person that they are which you are already doing. Children with autism process emotions and words differently but there voices are heard & loved even if not spoken.

    • I just wanted to tell you how much I enjoyed reading this. I am a friend of tina’s and I have a 3 year old son with autism, His name is andrew and he is my world, and reading this made me cry…it’s exactly how I feel. I couldn’t be more blessed to have such a perfect child. I just want to wish you and your family the very best.

  3. OK, I read the posts backwards, this is the last one I read. I’m not going to lie, it made me boo hoo. I cried because you are so fu$%ing awesome, not because is feel sorry for you. Evie and Maxine are so blessed to have parents like you and Scott, they are the luckiest girls in the world!!!

  4. Pingback: owning it | love explosions

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