More than two years ago, I wrote a blog post about what scared me most about the future. Well, this week I faced that fear.
One night, after her bath, my daughter’s caregiver Laura* was massaging her feet. My daughter Syona’s cerebral palsy means her muscles are tight and daily massages help keep her slightly more comfortable. I walked into the room with her medication, ready to start her bedtime routine when she said, “massaging my feet.” It’s not uncommon for Syona to verbally share what’s happening. I responded, “Yes, she’s massaging your feet.” Then Syona said, “massaging my feet because I can’t walk.”
And whoosh!—just like that—a wave of grief washed over me. It was the first time my little girl thought she couldn’t do something.
Syona was very matter-of-fact about it all, which I expect from her. She wasn’t sad about not walking, she was simply making an observation. But she looked like she wanted me to say something more. So I swallowed my tears for the time being and asked her if she wanted me to tell her why it was difficult for her to walk. She said yes, so I explained that she needed to use her walker or wheelchair to get around. I asked her if she remembered how her muscles sometimes are uncomfortable because they’re tight. She said yes. I explained that was why it’s hard for her to walk. I think I also mumbled some gibberish about the condition being in her brain, but showing up in her muscles—probably way too much information for a four-year-old. At that point I was just trying to hold it together. I asked her if that answered her question. She said yes, and we got back to our bedtime routine.
We’ve been very cautious about using the word “can’t” in our house. We talk about how Syona is capable of doing things and we explain the modifications we make. And we typically try and take her lead when explaining things. We don’t focus only on walking and Syona knows that we’re equally as proud of her whether she’s walking or wheeling around.
Over the last several weeks, Syona has noticed people walking a lot more. She would comment when I would walk to get something, or she would watch carefully when other kids were moving around her. So, perhaps I should have been better prepared for her questions. I knew the day was coming when she would ask about her disability, and I was dedicated to talking about it openly. I just didn’t expect it so soon.
So that night, I put my little girl to bed, laying with her just a little bit longer than usual and kissing her beautiful face one extra time after she had fallen asleep.
When I came downstairs I told Dilip what had happened and sent a note to her teacher and service coordinator asking for their insight and advice. They were great, responding so quickly and equipping us with a number of books and resources to help Syona. I also turned to an online parent group I frequent, where people are so quick to offer their experiences and support.
I realized that, yes, I just faced a big fear, but I didn’t have to face it alone. I had the support of our family and our “village” behind me. But most importantly, I faced it with Syona together.
How do you explain disabilities to your children?
*Name has been changed
Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.