As in other lapses in posts, the reason there have been no posts lately is because there is nothing new to report.  We have been waiting since March for approval from the insurance company to test Trevor for Hereditary Spastic Paraplegia.  Insurance, so far, has denied it because “a diagnosis of HSP will not change the course of treatment”, so they deem it unnecessary.   I could go into a rant about how absolutely furious that makes me, but I guess the internet has enough ‘angry Mom’ posts, so I’ll just leave you to fill in the blanks about why that’s just… a stupid reason to not test a kid. 

But lately I’ve been moved to post. Even though nothing has changed, it hasn’t gone away either. We go days at a time without paying attention to It. The Thing that seems chained to Trevor’s feet, tripping him, making his legs heavy, making him tired and slow, stealing his ability to glide around on a scooter like his 2 year old brother.  Like shoelaces tied together for a prank, or shackles on a prisoner, It’s always in his way. As Trevor gets older and becomes more aware, the effects on his own self-image is evident.  A few nights ago, I recorded him walking, because he’s developing a limp and I wanted his neurologist to see it at its worst.


 After I recorded it, Trevor asked to see it.  Of course, I showed him–

and of course, I wished I hadn’t.  

Not that he wouldn’t see his own reflection someday, but there’s nothing quite like seeing the stormclouds roll into his clear, grey eyes when he sees himself and recoils, saying,

“Wait…  I walk like that?…”

He doesn’t get a break from It, and occasionally lately, It’s been taunting me, too. “I was there”, It says. “You didn’t see me!”  …when Thor flies through physical milestones that Trevor couldn’t reach, but that I wrote off as Trevor being just clumsy or lazy, I remember and flinch a little bit that I actually thought the word ‘lazy’.

Thor is a big kid.  Trevor wasn’t.  Trevor was pretty small as a toddler, and I’d call him about average size now.  Thor will certainly pass Trevor up in size before he is 10 years old, I’m sure of it.  So although Thor is only 2 years old right now, he’s outgrown Trevor’s old size 3 clothes, forcing me to climb up the ladder to the loft of the big storage barn and bring down Trevor’s old size 4 bins.

I started pulling out the old clothes, and smiling as I remembered cute little Trevor in all of the outfits. “Why aren’t there any shoes in here??” was the first thing I wondered.  But then I realized that they were likely too destroyed to keep.  Trevor was so mysteriously hard on the toes of his shoes.  Then, I began noticing the holes.  Seemingly every pair of jeans I pulled out had the knees blown out, or almost worn through.  Pairs of socks kept showing up with holes in the toe.  Footie-pajamas with holes in the toe on one foot. Sometimes both. Now, I know that little boys get holes in the knees and footie pajamas get worn out eventually, and, back, then, that’s what I wrote it off as.  Just the mommy-perils of having a little boy.

 But… something about it struck me, I just couldn’t put my finger on it.
In the back of my head I know why they’re there, but I haven’t been stopping much to think about it.

 Today, as I was getting Thor dressed for bed, he was really bugged about something but I didn’t know what it was.  It’s common for him these days to just whiiiiiine and whine but not tell us what he’s upset about.    While I held him in a big hug and rocked his giant toddler-body for a bit before putting him down in bed, he kept squirming and whining, leaning to the side and pulling at his jammies.  Finally he said, “Iss my toe! My toe! Iss wipped. My toe’s a holllllle!”  I looked down and saw Thor’s cute little toe poking out.  “Uh Oh!” I said, and cheerfully carried him to the bathroom to set him down on the counter and search for scissors to lop off the pesky feet in the jammies.
As I held the fabric of the jammies to cut the feet out, something struck me.

They looked brand new.  
Hardly worn.  No pilling on the fleece, bright and vibrant colors, no seams stretching or stains of any kind.  The fleece was still soft, as if it had hardly been off the shelves. 

But already, despite very little wear in the pajamas themselves, that hole in his toe was there. In fact, that’s why the jeans and other jammies seemed striking to me.  They hardly seemed worn at all, but had big holes in them from falling, falling, falling on his knees and dragging his toes.
  This time, I stopped and stared… and felt.

Sad?
Guilty?
Grief?

Maybe… weirdly nostalgic

–of a time when I didn’t know It was there, and neither did Trevor.  That every hole and scuff and scrape and fall was laughed off as “Boys are so rough!”  “Toddlers are so clumsy!”  “Boy, Trevor is NOT destined to be an athlete!”

For some reason it really hit me tonight.   Trevor is, for the most part, a happy and functioning little boy.  This disorder, or disease, or whatever it may be is not a tragic thing.  Trevor will still live a long and happy life.  But being reminded that it was there before I noticed, and always wondering exactly when it showed up has always bothered me.   I’ve been seeing the retrospective signs, but tonight I really took a moment to recognize that It. was. there.  Long before we saw It.  Long before we spotted It and forced It to come out of hiding and into the open as “a Thing”.  As Trevor’s Thing.

Now, let me be clear, I know that spotting It earlier wouldn’t have changed a thing, as It’s not something like cancer that needs to be caught early.  Early or late, It’s still there and unchanging.  (In fact, ironically,  that’s what the insurance company is trying to say– call It what you will, people, It’s not changing!)   So I know that I don’t need to harbor more Mommy-Guilt about this, but there is a certain grief that hits me when I stop and recognize that the signs were there, and we were all oblivious.

Maybe it’s not so much feeling guilty for not knowing,
…but a bit of wishing to go back to when we didn’t know.

When toe-holes were just rough boys. 

Written by jackie