Life as a mother of a kid with seizures: Part 1

Josh was born at 27 weeks.  He did the "normal" preemie things while in the NICU:  had a grade IV intraventricular hemorrhage (brain bleed)--and its accompanying spinal taps to relieve the pressure, retinopathy of prematurity--and its accompanying laser eye surgeries, and the like.  The early days were a time of not knowing whether I'd be able to even touch Josh because of how sensitive he was to everything.  But as the weeks, and then months, progressed, so did Josh.

Four months after being born, Josh was able to come home.  I thought we had "made it."  Sure, we had a lot of medicines, doctors' visits, home and office-visit therapies.  But, we'd "made it."  Josh was home.  He was alive.  He was doing well.

He was one year old when we got the diagnosis that he had cerebral palsy.  This altered the future we thought we had with him, but it was a diagnosis we could live with.  About this time, however, we also found out he needed "brain surgery" to even out the fluid in his ventricles.

It was the first time my world was shaken since he had been born.

The world I had envisioned for my son changed.  My world had changed.  I no longer could trust that we'd left the NICU behind us.  Or that the son I thought I had was actually there.  I held Josh so tight that day we got the call.  I hoped that I could hold on to "him,"  to protect him from anything else that might ever happen.

Josh is just a few weeks away from 16.  On August 6th, 2018, he had his first-ever seizure.  This is remarkable in the fact that a preemie with a grade IV "brain bleed" can expect to have seizures.  In the years following his birth, new doctors were surprised when we answered their question with "No, he has never had a seizure."  Ever.

That day was the second time my world was shaken since he had been born. And the ground has yet to settle. 

I got the best hug today.  It was one of those squeeze-you-tight-so-all-my-love-enters-into-your-soul kind of hugs.  This kind of hug is rare, but when you get one its impact is tremendous.

I can't help but wonder what the world would be like if each and every day we all got a hug like this.

"Education is about learning how to deal with uncertainty and ambiguity.  It is about learning how to savor the quality of the journey.  It is about inquiry and deliberation.  It is about becoming critically minded and intellectually curious, and it is about learning how to frame and pursue your own educational aims." --Elliot Eisner

"Every time you speak the truth you're making justice in this world. . . . The doors you open others can come through."--George Ella Lyon

"There is no way to peace.
Peace is the way."
--A.J. Muste

Where I'm From

I am from hex signs,

from pretzels and Lebanon balogna.

I am from carpenter ants (black, hearty, like moving bits of blackberries along the front porch).

I am from the torrential summer rains, the still waters of Bernhart's Dam.

I am from diet Coke and prozac,

from Elsie and Leah.

I am from the laugh when you fall and the pick-you-up when you've fallen.

From be nice and damn, I'm good.

I am from He is Risen! Families are Forever, and I'm trying to be like Jesus.

I'm from Wernersville and Kutztown

Tastykakes and pork-n-sauerkraut, eaten every New Year's Day so that the year is filled with luck.

From the great-grandfather who lifted 100-lb barrels of pickles,

the grandmother who lifted elderly patients from beds to wash and bathe them.

I am from notebooks of names carefully gathered and documented--

the settlers of New York, the farmers of the Midwest and the Germans of Pennsylvania,

the land grant owners of New Mexico--

names plucked and preserved from the fruit of my family tree.

(c) tlm

I'm reading Vygotsky's Thought and Language.  I love Vygotsky.  He's one of my academic heroes.  But . . . I have to admit, I love Mind in Society better.  I'm getting a little tired of Vygotsky analyzing other people's theories on thought and language.  I want to read what Vygotsky has to say on the matter.
It's like when I go to church . . . I get tired of people comparing our church to other churches.  I just want to hear about what we believe.