“I feel sad because my legs don’t work so good. I can’t run fast like Lily. My legs just don’t work.” It’s the heavy stillness that blankets the car after those words are spoken, where the only sound is the rapid thump of your heart racing in your ears, followed by the slow exhale of breath you didn’t even realize you were holding. Someone needs to step in. Someone ought to reassure him that it’s alright, that he’s perfect just as he is, that we knew this journey would be challenging, and that we will navigate it together.
Isn’t anyone going to say something? I’m barely holding back tears that are threatening to spill over since those words tumbled from his sweet, innocent lips, laden with sorrow. But it’s just him and me in the car. And Lily. I’m expected to be the one to comfort him, but what on Earth can I say? That everything will be fine? That it’s unfair? That I’m sorry?
I thought we had more time. I imagined we wouldn’t be facing this yet. At just four years old, this little boy—my wonderful son who just last week realized he is a boy, who can remember my name, “Jamie,” but still struggles to remember his dad’s name, who thinks that what he poops out of is his “bummy” and the thing he pees out of is also his “bummy”—I thought we had more time.
More time for him to roam the world blissfully unaware of his Cerebral Palsy. More time before he became aware of the harshness dealt by fate, genetics, or perhaps my forgetfulness in taking my prenatal vitamins. We told ourselves that one of the “silver linings” of his cognitive challenges was that, at least, he didn’t know he was different. At least he wasn’t aware that while most kids don’t have to work so hard just to get through the day, he does, with eight hours of therapy weekly. Thank goodness he didn’t realize the difference.
But today, he does know. It became evident on our drive to preschool when Lily remarked that Oliver didn’t look so good. I glanced at him in the rearview mirror, half expecting him to appear unwell, but he looked fine. I thought perhaps he was still upset because Scott told him he couldn’t wear his favorite dinosaur watch to school. Seizing the opportunity for some heartfelt communication, I encouraged Lily to ask him what was bothering him.
“Ollie, what’s wrong?” she asked gently.
“I feel sad,” he replied.
“Why are you sad?” she pressed.
“I feel sad because my legs don’t work so good. I can’t run fast like Lily,” he answered.
I think I quietly gasped.
And then, like a true champion, Lily stepped in. This five-year-old who knows too much for her age, who faces her own struggles with arthritis and sensory issues—she saved me. She dove right in, delivering the most inspiring encouragement I’ve ever heard.
“No, Ollie, you’re going to be really fast one day! You can wear my sneakers when you grow into them, even if they’re pink—they light up and that makes you really fast! You should ask Daddy for help with your running skills. He’s really good at that stuff. I bet you’ll even beat me one day!” she said earnestly.
For my daughter, telling her younger brother he would one day outrun her was a monumental act of kindness. She treasures her speed, and yet she offered it to him without a second thought. I thought she had more time—before she had to start uplifting him, defending him, and explaining his challenges. She’s only five and hasn’t even started Kindergarten yet, but somehow, she understood that he needed this encouragement.
As we arrived at his school, I dropped him off and let his therapist know he was feeling a little down today. He kissed me goodbye, looking at me with those bright blue-green eyes that everyone comments on. But today, they lacked the usual sparkle. Something had clicked within him, and he felt it.
It’s that moment when you realize something you can’t un-know. When you see that look in your child’s eyes that you can’t un-see, or hear the profound sadness in their voice that lingers. It’s unbearable. My heart aches for him, for his little heart that now understands.
Afterward, I dropped off Lily at her school, turning to her at the first red light to express how incredibly proud I was of her. How her generosity, grace, and love for her brother shone through in those moments. I then called Scott as I left the school driveway, sharing the morning’s events, finally allowing the tears I had been holding back to flow. I wondered aloud what we were going to do, how we would explain all of this to our boy.
I’ve spent the morning in tears, contemplating that conversation and the many that will inevitably follow. I still have no idea what to tell him. There are some things that a hug and a kiss cannot mend. There are frustrations I want to voice quietly to him, wanting him to know how sorry I am for what he is going through, that he deserves better, that I wish it had been me instead. All the while, I want him to understand why I’m not sorry at all—that he is my heart, that I wouldn’t trade him for the world, and that in these four long years, he has made me proud every single day in ways he may not yet understand.
But now he knows. I thought we had more time.
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In summary, this heartfelt story conveys the profound emotional journey of a parent grappling with their child’s awareness of his condition. It highlights the beauty of sibling support and the challenges of navigating difficult conversations in a loving family setting.