When My 3-Year-Old Asked Me Why She Has a Disability

My daughter Eva is 3 years old and always seems to be looking for exceptions to the rules. “Why can you stay up and I have to go to bed?” Or “Why don’t men wear shirts when they are running and women do?”

But the question I wasn’t prepared for came when we were pulling out of her daycare parking lot one early afternoon.

Normally, my daughter is happy to leave “school” and go home and play or go to the park. But she knows these mid-afternoon pickups are different — she knows they take her away from another game of “Frozen” on the playground or music time, or even snack time (yes, snack time is a pretty big deal to a pre-schooler).

“Why do my friends get to stay and play outside and I have to go to therapy?” she asked. And my heart fell. I realized that although we had been going to occupational therapy regularly since she was 6 weeks old, we had never told her why.

If I’m honest, I was avoiding the conversation.

Eva goes to biweekly therapy to help her recover from an injury she experienced as she was being born — it’s called obstetric brachial plexus palsy. Her left arm is paralyzed and two surgeries later, she struggles to wiggle most of “Leftie’s” fingers and hasn’t yet been able to bend her elbow. Her therapies are stressful. There’s time off work for myself or my husband. There’s worrying and wondering what progress, if any, is being seen in her recovery, and there’s the hard slog getting a squirmy, easily distracted kid to cooperate with exercises and activities.

She knows we pay a lot of attention to her Leftie, and she knows it functions differently than other children’s arms do. But we hadn’t really shared with her what happened to her. We have tended to gloss over her questions about her birth and babyhood that every toddler her age seems to have.

Answering Eva’s questions about why she has to go to therapy or what it was like when she was born means I have to re-surface my own trauma from her delivery.

You know that book, “On the Night You Were Born”? It’s beautiful, but I admit, I only read it to her once before I tearfully put it back on the shelf never wanting to open it again. The book was a baby shower gift, after all, one I didn’t want to throw away just because it made me feel sad.

And yet, whenever Eva reaches for it, I carefully redirect her to anything else — even if it means reading “Max’s Breakfast” a million times.

Despite three years of counseling, I still suffer when I’m reading her a board book with polar bears on the cover because it conveys the emotions of the typical birth she and I deserved and never got.

Back to the highway, we were running late to our appointment and had reached a traffic standstill. I didn’t want to wait to answer her until we reached therapy, but I was in the front and she was in her car seat in the back. I couldn’t take her into my arms and cuddle her. And still, Eva’s complaint hung there, like a one-question, pass/fail exam.

If I ignored it, Eva might feel dismissed. If I chose the wrong words, their impact might be hard to undo later. Toddlers seem always to find the wrong statement to hang onto like an empty lollipop stick.

So, our conversation went something like this:

Me: “You know how some kids skin their knees on the playground and other children don’t?”

Eva: “Yeah.”

Me: “Well, some babies are born healthy and some get hurt when they are born. You got hurt.”

Eva: “But why did I have to get hurt?”

Me: “I don’t know, honey. But I do know that no one wanted you to get hurt. And Mommy and Daddy and your therapists and doctors and all your family and friends do a lot to help your Leftie feel better.”

I’m not sure if I’ve convinced her or said enough to help her feel less frustrated by her situation. I could see her in my rear view window in her Minnie Mouse t-shirt playing with her pink tennis shoes with her right hand only.

Eventually, she asked a question about why there is “traffic,” and we moved on. Did I pass or fail? I don’t think I’ll know for a while.

For those who may wonder why I don’t point out children with more involved conditions than her — whom she sees at her appointments — it’s because I don’t believe these comparisons are fair to either child. I wouldn’t want a healthy child using Eva as a reason to be grateful for what he or she has. Eva’s self-acceptance and gratitude for who she is and what she has must come from within, not as a result of misplaced pity or uninformed judgement about someone else’s life.

We arrive at the room with the gym where she pops bubbles and catches balls to learn to use Leftie. I ask her therapist to talk to her a little more about her condition.

“I think mommy and daddy are sad about Leftie. I think they would be happy if it [her injury] didn’t happen.” This is true. I can’t deny any of it.

Her therapist tells her that even if we are sad, we still want Leftie to get better. And I tell her that we think she is wonderful just as she is. I make a mental note to tell her this more often.

As hard as Eva works on her physical recovery, I am convinced we now must begin work, sooner than I thought, to support her emotional health as well. Perhaps that will involve psychological therapy for her as well. Meanwhile, I’ll keep talking to her about her injury, and about her birth. It is going to be hard, and the words aren’t going to be easy to find, but it will be important for her and for me.

This story needs to come off the shelf. And perhaps, in telling it more often, we both will come to accept and embrace these injured parts of ourselves.