After returning from a much-needed vacation, I’ve started unpacking our bags and tackling chores—laundry is in the wash, and the dishwasher is humming away in the background. Now, I find myself in the recliner, diving deep into research about my son Leo’s recent diagnosis. I’m learning about spastic diplegia cerebral palsy while a familiar movie, Avatar, plays softly in the background.
Why mention the movie when my mind is occupied with this weighty news? It’s because it serves as a poignant reminder of past struggles. As I sit here, my heart feels heavy with the emotional fallout of adding another diagnosis to Leo’s growing medical history. This isn’t the first time I’ve faced difficult news while Avatar was on the screen.
I recall a particularly challenging night after Leo was diagnosed with Down syndrome, just before our release from the hospital. While my partner, Sam, was out grabbing dinner, I turned on the television and found myself watching Avatar. Despite its captivating visuals, I couldn’t engage with the film; my mind was elsewhere. The pain I felt was both intense and isolating—I was trapped in my own bubble of worry.
At that moment, I pondered our future and whether I would ever find happiness in this new life. The reality I faced was far from what I had envisioned. I never imagined becoming a parent to a preemie or a child with special needs. But as time passed, I learned to embrace our new normal. Fast forward two and a half years, and Leo is a spirited child, but we’ve noticed challenges with his gross motor skills.
It wasn’t until a physical therapist suggested that Leo might be experiencing stiffness in his legs and ankles that I began to voice my concerns. Following that, I sought a referral to a neurologist, especially since Leo had experienced two brain bleeds at birth—one graded at two and the other borderline grade three. Today, we received the diagnosis of spastic diplegia cerebral palsy.
Even though I anticipated this outcome, it was a difficult pill to swallow. Children with Down syndrome rarely have a simultaneous diagnosis of CP; typically, they exhibit low muscle tone, while those with spastic CP often deal with high muscle tone. For Leo, these conditions seem to be at odds, intensifying my feelings of isolation. It’s rare to find someone who shares the complexities of having both a micro preemie and a child with Down syndrome, and now we find ourselves navigating the dual challenges of CP and Down syndrome.
As Avatar plays softly in the background, I’m reminded of how far we’ve come. While this new diagnosis is another unexpected twist in our journey, it also brings clarity. Watching Leo struggle with motor skills more than his peers has led us to better understand his needs. For instance, he thrives during bath time, where the buoyancy helps alleviate some stiffness, allowing him to move with more ease.
I won’t pretend that I’m completely at peace with this new chapter. Parents of children with special needs often experience emotions in waves, and this diagnosis is no exception. However, just as Jake Sully in Avatar learns to adapt to his new reality, I know our family will continue to adapt and grow through these experiences.
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In summary, receiving a new diagnosis for your child is a challenging experience that can evoke a wide range of emotions. While it may feel overwhelming initially, it can also provide clarity and direction in supporting your child’s unique needs. Embracing these challenges can lead to growth and understanding for both you and your child.