To the Mom Who Caught Me Staring at Her Child With Disabilities

At least once a week, one of those “To the mom who…” letters pop up on my newsfeed. Basically they all have the same message: just let people feel good about themselves, their neighbors, their kids and their neighbor’s kids. Don’t judge. You don’t know what someone is struggling with.

A while ago I saw a letter like this addressed to a grocery store patron who had stared at a child on the autism spectrum. The mother of the child was incensed and defensive. She commented about her son’s humanity, her occasional embarrassment for his behavior and her acceptance of his challenges. She implied the person staring had an issue with her child, but there was no actual interaction. The mom was assuming the look was one of censure without any actual knowledge of what was going on in the other party’s mind.

I’d like to address this, because I’ve often found myself thinking much about the nature of staring at non-“typical” children.

So, here’s my (short) note to the mom who may see me staring at her child.

Dear Mom, 

I saw you pushing your beautiful child in her wheelchair today. You were really struggling to handle all of your belongings and get the chair over the curb. I wanted to offer you my help, but you must forgive me, I couldn’t. You see — when I saw you with her, I froze. I found it difficult to breathe. The blood began to pound in my ears, and I had to back away.

Someone — maybe you — might have noticed. They may have interpreted my reluctance to offer assistance as unkind. They may have believed I was disgusted or annoyed.

This is far from the truth.

I am staring because I wish I had your life. I wish I was pushing that wheelchair. 

For a split second when I saw you with your child, she was mine. It was me struggling. And my daughter was so close to me I could feel her skin under my fingertips. 

Then, the moment was gone. Your proximity left me out of sorts. 

There are many of us out here who were just like you, during that moment when a diagnosis caused all of our plans to go awry. We talked about treatments and probabilities. Quality of life issues. We know all of the code words, and we know about tubes and wires, and we know about experimental treatments for rare disorders. 

Then our children died. 

Suddenly, we were left in a limbo. We can’t walk with you, pushing our own children over a curb. Our daughters will never play with your daughter. 

When I saw you struggle I was overwhelmed by possibilities which will never come to fruition.

My blunt staring was my mind’s eye crossing the veil and visualizing a life with my daughter. I feel like I cannot fully claim ownership to the title “special needs parent” because I parented my daughter for such a short time. I don’t know the ins and outs of dealing with hospital billing and extended stays at a Ronald McDonald house. You are a hero beyond my understanding.

On the flip side, I am the most extreme example of a special needs parent: my child’s special needs were so extensive this world could not satisfy them. 

I envy you. Your clear-cut mission, loving your child in a tangible way the world can see. I envy your troubles, your fights with health insurance, your tough decisions.

I want it all.

I see your child in all of her physical reality, and my broken heart is touched by the memory of my daughter. 

So, the next time you see someone staring, please don’t assume they are staring in derision. They may be like me: seeing their unfulfilled future in your exceptional child. 

Thank you for (unintentionally) giving me a glimpse of what my world could be. 

I am forever grateful,

Sarah