The discussion was a blur but these were definite terms that stood out during Toby's first trip to the neurologist. And they were scary. In fact, they still are. Shocking, in fact. We knew for a long time that something was 'wrong' with Toby. As he grew and learned to play, he wasn't using his right hand - it's like it didn't exist to him. At 6 months, he wasn't sitting unsupported. He seemed to be just fine cognitively and socially but physically? He needed help.
After that first appointment, the questions started. And they were all over the place.
Did I do something to cause the stroke? How much of his brain is affected? Is he going to need a wheelchair? Will it affect his learning? Will he go to a regular school? Will he be able to go to college? What did I do wrong? Am I going to be able to handle this?
Suddenly, I became obsessed with something I knew very little about. I started googling into all hours of the night and I ended up a complete wreck. I don't know why people do this to themselves when faced with medical issues. I guess it's our desperation to know something immediately - to soothe some of the worry. In hindsight, I had no idea what I was doing. I'm a librarian and my love of information is also my downfall.
"BREATHE" I finally told myself, "Just stop and breathe for a minute!"
After that, things began to get easier.
I started researching
.
Not just googling - the real deal. I learned that "cerebral palsy" is an umbrella term for all kinds of neurological issues and abilities and Toby's abilities can differ greatly from other kids along the spectrum. Kids with hemiplegic cerebral palsy typically aren't wheelchair bound. They generally have normal intelligence. And with enough physical therapy, they go on to live pretty 'normal' lives - whatever that means anyways.
I started looking for support.
There is a Facebook group called Hemikids and Pediatric Stroke Survivors. I never dreamed I would find so much love and support there but every day it has something to offer. There is a branch of that group specifically for kids in Toby's age range as well. There are all kinds of people out there going through just the same thing.
I learned there is hope.
I learned that "cerebral palsy" is an umbrella term for all kinds of neurological issues and abilities and Toby's abilities can differ greatly from other kids along the spectrum. His symptoms seem to be minimal and for that I am so incredibly thankful. Kids with hemiplegic cerebral palsy typically aren't wheelchair bound. They generally have normal intelligence. And with enough physical therapy, they go on to live pretty 'normal' lives - whatever that means anyways. Toby will always have his struggles but there is a silver lining.
So now we start our new adventure. More trips to Kansas City, more aggressive physical therapy, and more questions. But every little glimpse of progress and every sweet little boy smile are what keeps us going through all of it.
Like my mom always says, "How do you eat an elephant? One bite at a time."
