Updated: October 28, 2019
Originally Published: November 5, 2014
“I feel sad because my legs don’t work as well. I can’t run fast like Tyler. My legs just don’t work.”
In that heavy silence that follows a devastating truth, the only sound is your heart racing in your ears, followed by the air slowly escaping your lungs—the breath held since those words escaped his lips.
Someone should really say something. Someone should reassure him that he is perfect, that we anticipated challenges, and we always will, but we will face them together.
Isn’t anyone going to say anything? Because I am struggling to suppress the sob building in my throat since that heartbreaking confession came from his sweet little mouth, filled with sorrow. But it’s just me in the car with him and Tyler, and I am expected to comfort him. What on Earth am I supposed to say? That everything will be fine? That it’s unfair? That I’m sorry?
I thought we had more time.
I believed we wouldn’t reach this point yet, that at four years old, this boy—my precious boy who just learned last week that he is indeed a boy, who can remember my name as “Jamie” but still struggles to recall his dad’s name, who thinks the thing he poops from is his “tushie” and the thing he pees from is also a “tushie”—well, I thought we had more time.
I thought he had more time. More time to navigate this world unaware of his Cerebral Palsy, more time before he recognized the cruel combination of fate, genetics, and perhaps my neglect of prenatal vitamins that dealt him this hand.
That was one of our “silver linings”—the comforting thoughts we shared about his cognitive challenges, reminding ourselves that at least he didn’t know. At least he wasn’t aware of being different, that other kids don’t have to struggle just to get through each day, that it isn’t normal to endure eight hours of therapy weekly. At least he didn’t realize he was different, we told ourselves. Thank goodness for that.
But he knows now. This revelation hit during our drive to school when Tyler mentioned that Owen didn’t look very good. I glanced through the rearview mirror, expecting to see him a ghastly shade of green, but he looked fine. I thought it was probably because he was still upset about not being allowed to wear his favorite watch to school. I saw this as an opportunity for open communication and encouraged Tyler to ask him what was wrong.
“Owey, what’s wrong?” she asked gently.
“I sad,” he replied.
“Why are you sad?” she continued.
“I sad because my legs no work so good. I no run fast like Tyler. My legs no work,” he said.
I think I gasped. Quietly, but it happened.
And then Tyler jumped in. This little girl, who understands far more than any child should, came to the rescue. She delivered the best pep talk I’ve ever heard.
“No, Owey, you’re going to be really fast one day! You can wear my sneakers soon, and I’ll give them to you—even though they’re pink—because they light up and that makes people really fast. And you should ask Dad to help you with your running skills. Dad’s really good at that stuff. I bet you’ll even beat me one day!” she told him.
Her promise of one day beating her brother in a race was the ultimate act of kindness from my daughter. For this little one, who has her own challenges—battling arthritis and sensory issues that impact her strength and confidence—her speed is her pride and joy.
And she gave it to him without a second thought. I thought she had more time before she needed to offer him encouragement, to defend him, to explain situations to him and on his behalf. She’s only five, not even in kindergarten, and yet she instinctively knew he needed this.
As we arrived at his school, I dropped him off, informing his therapist that he was feeling a bit down today. He kissed me goodbye, looking at me with his clear blue-green eyes—those eyes that often draw compliments—and they were cast downward, devoid of their usual sparkle. He was feeling it now; he had made the connection.
It’s that moment when you understand something you can’t unlearn. It’s when you see that look in your child’s eyes that you can’t unsee, or hear that deep sadness in his voice that you can’t unhear.
It’s unbearable. My heart aches for him—his little heart that knows too much now.
Afterward, I dropped Tyler off at her school, turning to her at the first red light to express how incredibly proud I was. I praised her for her generosity, grace, and love toward Owen during that moment.
Then, as I pulled away from her school, I called my partner, Mark, to share what had just transpired, finally releasing the tears that had been waiting to flow. I found myself wondering aloud what we were going to do, how we would explain this to Owen.
I’ve cried on and off all morning, reflecting on that conversation and the many discussions that will inevitably follow. And I still have no idea how to address it with him. There are issues that a hug and a kiss cannot fix. There are things I don’t have answers for, and yet my apologies feel grossly inadequate. I want to whisper my regrets to him, wanting him to know how sorry I am for what he faces, that he didn’t deserve this, that I wish it had been me instead—while simultaneously making sure he knows I wouldn’t trade him for anything. I’m so proud of him every single day, even if he doesn’t understand why.
But he knows now.
I thought we had more time.
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Summary:
This poignant reflection captures the moment a parent realizes their child is becoming aware of their challenges, particularly when faced with a diagnosis like Cerebral Palsy. The author shares an emotional car ride with her children, where an innocent conversation reveals her son’s newfound understanding of his limitations. Her daughter’s heartfelt encouragement showcases the strength of familial love, even as the weight of the situation brings tears and uncertainty. The piece illustrates the struggle of coming to terms with unexpected challenges in parenting and the profound love that endures despite them.