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I Thought We Had More Time
I’m feeling down because my legs just aren’t working like they used to. I can’t run as fast as my friend Jake. My legs just won’t cooperate.
There’s this heavy silence that follows the moment when everything changes. It’s like you can hear your heart racing in your ears, drowning out everything else, as you exhale the breath you’ve been holding since those words were spoken.
Someone needs to say something. Someone should reassure him that it’s okay, that he’s perfect, that life may be tough but we’ll get through it together.
Isn’t anyone going to speak up? Because I’m fighting back tears that are just waiting to burst free since he said those heartbreaking words.
But it’s just me in the car with him. And Jake. I’m supposed to comfort him, but what on Earth do I say? That it’s going to be alright? That it’s unfair? That I’m sorry?
I thought we had more time.
I didn’t expect to be having this conversation yet. At just four years old, he’s my beautiful boy who finally learned that he’s a boy. He remembers my name is “Jamie,” but still struggles with his dad’s name. He thinks the part of him that poops is called his “tushie” and that the other part is also named “tushie.” I thought we had more time.
More time for him to wander through life unaware of his Cerebral Palsy, more time before he realizes the harsh truths that fate or genetics or whatever else dealt him this hand.
We used to tell ourselves things like “at least he doesn’t know,” that he’s not aware he’s different, that he doesn’t have to work so hard just to get through everyday life with eight hours of therapy each week. We thought we were lucky that he didn’t understand he was different. But now he does.
This became clear during our drive to preschool when he told me that Jake didn’t look so good. I looked back in the rearview mirror, half-expecting him to be unwell, but his complexion was fine. I figured it was just because he was upset about not being able to wear his favorite watch to school today.
I thought this was a good moment for Jake to talk about his feelings, so I encouraged him to ask what was wrong.
“Owey, what’s wrong?” he asked sweetly.
“I sad,” he replied.
“Why are you sad?” Jake pressed on.
“I sad because my legs no work so good. I no run fast like Jake. My legs no work,” he said.
I think I gasped—quietly, but it happened.
Then Jake came to the rescue. This little five-year-old who knows too much for her age stepped in without hesitation and gave him the most uplifting pep talk I’ve ever heard. “No, Owey, you’re going to be really fast one day. You can wear my sneakers when you grow into them! They’re pink but they light up, and that makes people really fast. Ask Dad for help with your running skills. I bet you’ll beat me one day!”
For her to say he would beat her in a race was a huge act of generosity for her, especially considering her own struggles with arthritis and confidence. And she just gave it to him, without a second thought.
I thought she had more time too. Time before she needed to give him pep talks, to stand up for him, to explain things to him. She’s only five and not even in kindergarten, yet somehow she knew he needed this.
When I dropped him off at school, I mentioned to his therapist that he was feeling a bit sad today. He kissed me goodbye, and I caught a glimpse of his beautiful eyes, usually sparkling, now dimmed with sadness. It hit me that he had made a connection and was feeling it.
It’s that moment when you realize something you can’t forget. When you see that look in your child’s eyes and hear the sadness in their voice, it’s heart-wrenching. I ache for him and his little heart that knows now.
Later, I dropped Jake off at her school and turned to her at the first red light to tell her how immensely proud I was of her. How she showed such love and grace toward her brother in that moment.
Then I called my partner, Mark, as I pulled out of the school lot, sharing what had just happened and finally letting the tears flow. I wondered what we were going to say to our boy, how we’d explain all of this to him.
I’ve been crying on and off all morning, reflecting on that conversation and the many more that will follow. I still have no idea what to tell him. Some things a hug can’t fix. There are so many apologies I want to whisper to him, wanting him to know that he didn’t deserve this, that I wish it had happened to me instead. But I also want him to know I wouldn’t change a thing about being his parent and that he makes me proud every single day.
But now he knows.
I thought we had more time.
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Summary
This heartfelt piece reflects on a mother’s emotional struggle as she navigates her son’s challenges with Cerebral Palsy and their shared moments of vulnerability. Through a poignant conversation with her children, she grapples with the realization that they are facing difficult truths sooner than she expected. The piece highlights the innocence of childhood, the strength of sibling bonds, and the deep love a parent has for their child, even in trying times.