Thinking before we speak and listening with the heart

Friends, please join me in welcoming author Brock Heasley. He's a gifted writer and awesome dad. His story reminds me of the kind of friend I want to be. 

Cami

by Brock Heasley

Talking about being the parent of a special needs child is just about my least favorite thing to do. Not because I don’t love Cami and don’t think she’s quite nearly the most brilliant and beautiful thing I’ve ever seen (she’s definitely in the top 4), but because conversations about Cami still have to adhere to the two-sided rule of communication.

I talk, then the other person talks. Repeat.

Monologue would be so much simpler.

Unless you’re the parent of a special needs kid yourself (and a lot of times not even then because the needs, being the special thing that they are, are as unique as the kids themselves), you don’t really know how to talk to a parent of a special needs kid.  Talking to a parent about their kid with the mental and physical handicaps is an almost universally uncomfortable thing for people to do. I know that because it comes across during even the simplest of exchanges.

And I know it because I wasn't always the parent of a special needs child.

CamiSunlight650 (1)

CamiSunlight650 (1)

[caption id="attachment_7101" align="aligncenter" width="585" caption="Cami, today. Photo provided by Brock Heasley."][/caption]

Cami will be seven-years-old in March, but most people assume she’s about three. She's very small and her muscles are so weak she expends twice as much effort being cute and amazing. She can say a few words, like "hi" and "bath" and, just recently, "I did it!" She also knows a few basic signs like “please” and “thank you” and “more.”

Cami is very social. She loves everybody and loves to give hugs. She used to wear glasses and need a walker. Though she's still pretty wobbly, watching her walk on her own brings me intense joy, every single time. She is the sweetest, most pure thing on this planet. She has been the source of my biggest smiles and I’ve never cried harder than when I’ve wept for her.

They say that having a special needs child is like grieving. They’re right. You have so many hopes and dreams for your child and they all go up in flames in a fire that never stops burning. Over the past 6+ years, we’ve gone through all the stages of grief and it’s only recently, after all the experts and tops in their fields have weighed in and come up with nothing–no diagnosis, no treatment, not even any idea as to how long she can expect to live–that we’ve finally just accepted. We accept Cami for who she is.

My wife and I are Cami’s parents today. Yesterday has so much pain in it that we don’t think about it that often. Tomorrow we know nothing about and I’m tired of guessing and fighting against that. I accept, totally, who Cami is today. I love her for it. I don’t know what’s next and I don’t have to know. I don’t even really care any more, because now is when we have her and all the light she brings.

That's what I want to tell people when they ask about her, but I don't. Because that's a lot, and, frankly, I know most people aren't interested in hearing it.

Some people are arrogant. They let their curiosity get the best of them because they don’t know what else to say, vomiting their “educated” guess as to Cami's condition as if the discovering of it will somehow allow them to move past their discomfort (it doesn’t). These people almost always have a third cousin whose kid has Down’s and are very quick to tell us how little they know about him.

Some people resort to platitudes. My favorite is the one that says my wife and I must be really special ourselves to be entrusted with the care of such a special spirit. As if we’ve won some secret lottery that they themselves are grateful they never got a ticket for. It’s a comforting falsehood meant only for the one speaking it. Special needs kids are born to both the loving and the crack addicts.

Some people have mental blocks when it comes to Cami. They see her, they seemingly recognize that there’s something not quite right there, but then it’s like they forget. They’ll go on and on about how their 9-month old just got up and started running one day. Meanwhile, my kid sits on the playground with the other kids running around her.

And she’s four.

CamiGlasses

CamiGlasses

[caption id="attachment_7102" align="aligncenter" width="585" caption="Cami, at age four. Photo provided by Brock Heasley."][/caption]

Some people just don’t talk to you at all. Sometimes, that’s kind of nice, but those people always stare. It’s weird and they're weird for doing it and it makes you feel weird.

I get it. I know it isn't always easy to know the right thing to say. Goodness knows my foot takes up such frequent residence in my mouth that I've given it a drawer. But knowing the right thing to say or do isn't the most important thing when talking to a parent of a child with special needs.

There are the people who just listen. Who ask honest, simple questions and remember to let you talk about how you feel about your child instead of telling you how you should feel. These people accept your child and you at face value, without comparison or judgement. They aren’t always going to know the right thing to say, but they’re in tune enough to recognize when they haven’t.

CamiGrin

CamiGrin

We call these people our friends. Because they speak to us with love.

Brock Heasley lives in Fresno, California with his wife and three daughters. Brock’s memoir, Raised by a Dead Man, a coming-of-age story between two shootings, is represented by Bonnie Solow of Solow Literary. Visit him at BrockHeasley.com