The Day We Heard “Cerebral Palsy”

After Amri’s orthopedic appointment in July 2024, it felt like life split into two versions.

The “before” where we were trying to piece together little things that did not quite make sense.

And the “after” where suddenly we had a diagnosis, new terminology, specialist referrals, and about a thousand emotions all happening at once.

To be honest, I do not even remember every detail from that appointment because my brain was trying to process so much information so quickly.

What I do remember is hearing the words “spastic hemiplegic cerebral palsy” and immediately feeling overwhelmed.

At that point, neither Amri’s dad nor I knew very much about cerebral palsy outside of very general knowledge. We had questions racing through our heads immediately.

What caused this?

Would it get worse?

Would he walk normally?

Would he be independent?

Did we miss signs earlier?

Were we supposed to know?

For anyone unfamiliar, cerebral palsy, often shortened to CP, is a neurological condition caused by injury or damage to the developing brain. It affects movement, muscle tone, coordination, and sometimes other areas depending on the child and severity.

In Amri’s case, his diagnosis was right side spastic hemiplegic cerebral palsy, meaning the right side of his body was affected by muscle tightness and abnormal muscle signaling.

One of the hardest parts early on was learning that CP looks VERY different from person to person.

Some individuals are mildly affected. Others are much more impacted. Some need mobility equipment while others do not. Some struggle more with speech, vision, feeding, balance, or muscle control.

There is no single “CP experience.”

That was both comforting and terrifying at the same time.

Immediately after diagnosis, we started scheduling appointments everywhere. Neurology. Physical therapy. Occupational therapy. Speech therapy. Feeding therapy.

Honestly, I think we saw every specialty possible within a single week.

And strangely enough, those first evaluations mostly came back… average.

Amri scored at or above average in several areas and did not qualify for services initially. In some ways, that was reassuring. In other ways, it left us feeling confused because we still knew something was not fully adding up.

At our neurology appointment, the neurologist explained that stretching would become one of the most important things we could do to help manage spasticity over time.

She also explained something that really stuck with us.

Children naturally use both sides of their body pretty equally early on. Strong preference for one side at a very young age can sometimes be a sign that the other side is more difficult to use.

Looking back now, that explained so much.

Without even realizing it, Amri heavily favored his left side.

Neurology also ordered an MRI to help determine what caused the CP diagnosis. At the time, we understood it mostly as gathering more information and not necessarily looking for anything new or scary.

We actually scheduled the MRI… and then canceled it the day before.

Amri has always had pretty intense separation anxiety and the facility we were scheduled at would not allow us to stay with him until he was asleep for sedation.

As his parents, it just did not feel right to us at the time.

So instead, we focused on what we could control.

Stretching daily.

Encouraging use of his right side.

Helping him stay active.

Learning everything we possibly could.

And honestly, grieving a little too.

I do not think enough people talk about how complicated emotions can feel after a diagnosis like this.

We were incredibly thankful that Amri was happy, smart, social, loving, and doing well in so many ways.

At the same time, there was fear of the unknown.

Fear about the future.

Fear of making the wrong decisions.

Fear that we were already behind somehow.

And then there was the guilt.

The kind where you replay every moment in your head wondering if there was something you should have noticed sooner.

Over time though, we started learning something important.

CP was part of Amri’s story, but it was not ALL of his story.

He was still the same funny, stubborn, sweet, monkey-obsessed little boy we knew before the diagnosis.

Now we just understood him better.

What we did not know yet was that over the next year, things would begin changing much faster physically, and we would eventually find ourselves researching a surgery we had never even heard of before: SDR.