An Open Letter From a Mom of a Child With a Disability

To mothers of typically-developing children,

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I see you at the park, the store, the library. 

Our eyes meet with a knowing look and an empathetic smile in an unspoken sign of solidarity. Motherhood. I see you. I feel you down to the exhausted bones, worried mind, anxiety, guilt, love, loss of identity, and loss of personal space. I too am mentally running through the list of things I still have to do that day, while simultaneously damning/praising Peppa Pig and her love of muddy puddles.

I notice when my daughter comes closer, though, you glance at her face. I see you looking at her longer than usual—longer than you would look at a child without a disability. The weight of your thoughts makes the air heavy and palpable. 

As you watch her, I watch you. I hear you, though you’re not saying anything. 

You wonder what she “has.” Does she understand what is going on or what her mom is saying to her? You wonder if her parents knew before she was born. How old is she? She’s so small, is that her disability? Does that make her shorter than my child? Does she get bullied? Kids are so mean. Are my kids mean? Have I ever even talked to them about other kids with a disability?  

You wonder what she ‘has.’ Does she understand what is going on or what her mom is saying to her? You wonder if her parents knew before she was born. How old is she? She’s so small, is that her disability? Does that make her shorter than my child? Does she get bullied? Kids are so mean. Are my kids mean? Have I ever even talked to them about other kids with a disability?

I don’t know if I could do it, you think. I couldn’t parent a child with a disability. I’m not strong enough. That has to be so hard. Thank God my kids don’t have disabilities, I wouldn’t even know where to begin. 

You wonder if her parents were sad, if they are always sad. Does her mom cry all the time? I’d probably cry all the time, you think. Are those braces on her feet? What are they for? Can she not walk without them? Can she talk? I haven’t heard her say anything. I wonder if she will ever talk, maybe she never will. Oh God that has to be so hard! 

The realization you’ve been staring is enough to bring you back to the present as fast as your toddler running towards an open front door. Then, you move on because let’s face it, as a mother you’re almost always 20 steps ahead of the present, in your mind. 

I saw it all though. I felt it. I felt it as surely as I feel the love I have for Felicity, my daughter who does have Down syndrome.

What I want you to know is I have probably shared some of those same thoughts before I became a mother. 

I want you to know, if this were your child, you could do this. I did it. I’m doing it, and it’s not because I’m this caricature of a modern-day Rosie the Riveter or even a Mother Theresa. When you choose to become a mother, you’re a mother regardless. You “mom” up. You change course because isn’t that what life is anyway? A constantly changing course. 

I want you to know, if this were your child, you could do this. I did it. I’m doing it, and it’s not because I’m this caricature of a modern-day Rosie the Riveter or even a Mother Theresa. When you choose to become a mother, you’re a mother regardless. You ‘mom’ up. You change course because isn’t that what life is anyway? A constantly changing course.

I want you to know the love I have for Felicity matches the love you have for your child. The pride I have is the same. The gratitude I have for being a mother is equal to yours. I also have a lot of the same worries, guilt, struggles, stories as you. In fact, I probably have some incredibly funny stories about mom-ing I’d love share. 

You know what else I have? A ferocity unmatched by the scariest of monsters, the most vicious of bears, the hangriest of teens. I birthed it the same moment Felicity came into this world.

When we see one another and smile in solidarity, please engage me the same as you would any other mama on the playground. Ask me questions. Assume I’m very much like any other mom. Assume my daughter is very much like your child. I am. She is. Don’t feel sorry for us or our children. Don’t stop your child from asking questions, encourage them. Encourage play between the children and open up that conversation with them and you. 

When you do, something incredible happens. Someone like my daughter becomes the norm. And in a perfect world, they play together in the park while we talk about Peppa and those damn puddles—and how we secretly love the wild abandon of puddle jumping.