The Tear That Unleashed My Greatest Fear: Homeschooling My Medically Complex Son

As most of you reading this know, we switched Asher's anti-seizure medication because Depakote made him super forgetful, his handwriting was shaky and he felt unable to hold onto new information or access information he already knew.  The 5 week transition was more than brutal--when he spoke it sounded as if he’d had a stroke.  It took him almost 5 minutes to get a sentence out, he was more emotional than I can describe, the first few weeks he thrashed in his sleep and all kinds of things that are too personal to share.   

Now here we are.  He’s transitioned to Topamax (and stayed on Keppra) and so we began Hutch School again (we took a break for the entire med transition). While I was reteaching him basic addition skills (when I realized he couldn’t figure out two plus zero), his bottom lip quivered. Confused, he asked, “I already learned this smart stuff. Why can’t I remember? I know I have five fingers, why do I need to learn again?”  And suddenly the tear that ran down his face unleashed my greatest fear.  Not only can he not remember, not only has he lost everything that three years of school have taught him, not only is he reading at a kindergarten (at best) level…he knows it.  He can remember knowing and now he knows what it feels like to forget.  And it hurts his heart.  

I've tried my best this month to run from this place.  I've kept him away from church, away from friends, away from anyone who would look at him funny or tell him to, "spit it out." Away from children who wouldn't understand why he was different from before and say something that may hurt his heart. I purposefully waited to begin the transition until after Christmas so he wouldn't be around too many people. 

Seeing it...seeing that tear...my heart shattered. 

Here we are, anyway.

It wasn't another person that showed him how different he'd become. 

It was me. 

While I may have excused myself and lost it in in laundry room--ending up in the fetal position on dirty towels, sobbing my eyes out--I came to a peace-filled conclusion a few hours later.  I’m trying hard to hang onto it today. It may not be your truth, but it's mine. 

I don’t care if he knows math.

I don’t care if we lose whole years.

I don’t care if he can barely read at a kindergarten level, even though he’s in 2nd grade. 

I don't care if we go through this whole thing year after year. 

What I DO care about, is that he feels confident in the fact that God is alive. That he feels confident in His Creator's abilities, not in his own. I care about Ash knowing that if Jesus is within him, so is that ability.  That Asher Stephen Hutchinson lacks nothing because Jesus Christ lacks nothing. So if this helps us open up and live in that conversation then SO BE IT. 

I want him to be kind and content and to serve people with absolute abandon.  I want him to waste every single talent God has put into him on other people EVERY DAY so that when he goes to sleep, there is no room to feel fear about tomorrow, he’ll be too tired. He will be SPENT, giving himself to others in the name of Jesus. 

The rest - the math, the ability to read at his grade level, being able to write a sentence - is only a means to that end. HE LITERALLY HAS A LIFETIME!   They can only prepare his mind for pursuing the passion that God has ALREADY placed in his little big heart. Education is secondary to the work that is being done in order to make him into a selfless man. 

Education will serve Asher, not the other way around. 

I've never put too much emphasis on grades, never gave a certain amount of money for As and less for Bs (no money is given at all actually which used to really tick them off haha). No matter what their report cards said, my words were generally the same to them.  Something along the lines of: I'm proud of you for completing your work this semester, it's cool to fill your mind with new things, now go outside and play. We didn't make too big of a deal over good grades or not so good grades. If they were disrespectful or not completing work, that was a problem.  If they didn't understand something, it wasn't cause for punishment.  We just looked into it more and decided whether that part of that subject needed further teaching. I say this because maybe that has made this way of thinking easier to grasp. God had already prepared my mind for it; I was already leaning that way, naturally. 

This whole blog...THIS is why I am homeschooling.  TODAY is why.  It has nothing to do with any argument against the public school system, it has to do with Asher. So that *I* can wind up sobbing in the fetal position and *he* doesn’t have to. I don't feel equipped for this, but here we are.  I love him, I want him to fly on the wings of purpose and I want him to learn endurance. I think God has us on the right path for such a journey.