Dear Esmé’s Mom: The Things You’re Afraid to Ask

Learning to Ask Questions

Over the years of being Esmé’s mom, writing about our family’s life here and elsewhere, and joining communities of writers, parents, and those touched by disability, I have learned a lot. The lessons are too many to expound upon here, now. However, I do want to focus on one of these lessons that has been on my mind so much lately:

It is ok to ask questions. And, it is ok to answer them.

They need not be perfect questions…and they need not be perfect answers. Sometimes just trying, with compassion and honesty, is enough.

So, I am going to ask all of you, to ask me some of the things you’re afraid to ask.

An Experiment: Ask Esmé’s Mom

It has taken me awhile, but over the last few years I have begun to realize that it is unbelievably difficult to frame questions about experiences that are not our own. It can be frightening to ask someone that you want to treat with kindness and understanding about things that you recognize may be painful for them. This is especially true when that person makes her way in the world by writing on the internet about the awkward shit people say to and about her child. It is even more true when one minute that person cracks a joke about something you’d assume might be painful, and the next minute they come apart over something you’d have assumed was totally benign. And when that same person (this person is me, in case anyone is confused) can just generally be a bit of an a-hole, perhaps no one can be blamed for just deciding to never, ever again ask anything in her presence.

All that said, I don’t want to be the person who is so closed up that no one in their right mind will ask me a question without first gearing up with a mouthguard and helmet. How else do we learn about each other, if not by asking questions? And what I want—what we all want, I think—is to understand each other better so we can grow closer together, not further apart.

So, I want to try something new here. I want to hear your questions about being Esmé’s mom, about our experience with disability or about parenting, in general. You can ask me about what goes on in my head when I smile at the stranger telling me that “God only gives you…” Or about the best cocktails to mix when prepping for an IEP meeting. Or why do you get so angry about someone just idling in the accessible parking spot for a minute?

And I want to try to answer those questions.

The Things You Might Be Afraid to Ask

Just by way of going through life with Esmé I have a sense of the kinds of things some people might want to ask—they are the questions we field regularly. Or they are the sticky spots in interactions that we regularly get caught in. Those are important questions that show parts what most people need and want to know about the experience of raising a child with a severe disability.

However, since I have thought to start asking people, I have also noticed that there are questions that lurk below the typical questions, the ones that are scarier to ask. And I really want to try to answer those, because they cut to the heart of the things that hold us back from creating connections.

I will do my best to provide the answers I see. Anyone who knows me knows that I am pretty damn good at being critical lecturing sharing my opinion. And, admittedly, here are certainly times when the emotional labor of having to educate others about how to treat my daughter can become exhausting. So, I am totally reserving my right to be a bit of a-hole when I need to be.

Consider Yourself Invited

Consider this an invitation. Below is a form where you can ask me the tough questions, the weird questions, the sad questions. You can do so anonymously, if you like. I’ll answer what I can, as honestly as I can.

And keep an eye out for answers to come.