Thursday, June 28, 2012

please don’t hate us for saying no




It’s that time of year again.



When invites to cook outs and beach days and pool parties start rolling in.  We know quite a few families (you know…for being home schoolers n’ all) in our community between youth sports and library programs and church.  It’s inevitable that we’ll get an invitation to a special something or other.



We rarely, if ever, go.



Not out of lack of desire.  Not because we secretly don’t like you.  Yes, I’m a mentalist on the side.  Wink.  We dread being asked.  And at the same time we love that we are.  It makes us feel special and liked and all warm n’ fuzzy inside.  And we’d totally love to say yes too. 



But have you met Trevy



I hate to blame it on him.  And truth be told…we do have home body tendencies.  But there was a time when we actually said yes to cookouts and pool parties.



The thing with loving and parenting a child like Trevy is that nothing is easy.  Beyond all the therapies and pharmacy runs and specialist appointments that fill my schedule - there just isn’t an easy place to care for him.  Although Disney was surprisingly smooth.  But only because he’s happy to be 5 point harnessed in his wheelchair/stroller when Mickey Mouse is the motivator.  Lots of visual stimulation right from his seat.  We packed gobs of snacks.  Also, the heat.  Makes ya sluggish.  Less curious energy to burn.  But in the vast majority of the world it is the exact opposite of easy to keep him safe.  Not even being at home is easy.  Although at home I can at least have a little faith in Toby and Bristel and the trusty lock on our gate to keep him safe-ish.  Sometimes I might even stay inside while the kiddos play in the entirely fenced and all gates padlocked yard.  Maybe I’ll try to dust or make dinner. Awfully hard to do when running back and forth to the windows every few seconds.  And occasionally jetting outside because he’s no where to be seen.  And doesn’t respond when called.  My head always goes to the worst places too.  Most recently I found him trying to climb the big bush on the side of the house.  Who knows why.  Maybe someday he’ll be able to tell me?  Climbing a bush…who cares, right?  But there was that time he got into the essential oils and we wound up in the ER because he ingested enough to be lethal.  Caring for Trevy at home is a lot of work too.  And our home is (mostly) Trevy proofed.  We’re now essential oil free.



Keeping him safe at your house?









It’s not really that we couldn’t go.  It’s that we couldn’t go and have a good time.  It’s that we couldn’t go and leave without a massive stress headache.  It’s that we know how much work it would take to keep him safe.  Work = Energy.  See us over here?  All dark circles and muffin-tops.  Those are our silent screams that we don’t have energy to spare.  My hair used to be cute all.the.time, people!  I used to actually smear on a little make up too.  And wear more than sweats which may or may not have holes in the bootie.  I used to have the ability to carve work outs into my day – which helped hold the muffin tops to mini sized rather than jumbo. 



Trevy is beautiful, extraordinary, amazing, miraculous…




and unbelievably exhausting.



Jonathan and I were just talking about all this last night because someone invited us to a cook out.  We talked about how awkward it is to say no and how much we’d love to say yes…






It would play out like this:



We would have The Conversation in the car.  The one where we blood oath that we will tag team Trevy.  That one of us will not ditch the other for a game of shooters or wiffle ball or…



We would pinky swear it.  Pinkies can have a death grip if you really mean it.



Because the one who gets ditched gets mad!  Very very mad.  Which is not healthy for our marriage.  Also, the couch is not comfy.



We made him together – we care for him together.  We’re a team.  Three cheers for Team Trevy!



And maybe you’ve seen us at a party and it looked like we had it all together.  Sometimes things go well for a few minutes.  We act all casual as we scope out the hazards (pool, multiple entries and exits to the house and yard, dogs, strangers, random things to climb, random things to eat, random places to smear poo, etc).  About 20 seconds in Trevor is already trying desperately to wriggle and wrangle his little hand out of ours.  Toby and Bristel are off being kids – because they safely can.  Also because it requires all of our attention to manage Trevy and before we can say boo they’re gonzo, jumping in the pool, playing tag.  They’re pretty capable and I don’t worry too much about them.  Although they have given me the random scare too.  Because kids will.  But mostly…they’re fully able to run wild with carefree abandon.  Everything in Trevor wants to run wild too.  To be one of the kids.  In some ways that’s exactly what he is.  And we could probably let him go too.  And he’d probably be safe for a minute or so.  Until he wasn’t.  Until he decides to just free style jump in the pool – even though it’s over his head and he still doesn’t understand he needs a bathing suit on first.  Or kick the dog – even though the dog has really big teeth and he’s showing all of them to him.  Or see what’s on the other side of the fence – even though he didn’t tell anyone he was curious.  Or what’s in the house – even though he wasn’t invited.  Or chase the car down the street because it looks like mommy’s – even though mommy is standing right behind him.  Or…well…if you can imagine it he’s probably done it. 



He needs 100% supervision 100% of the time.



I repeat…Trevor needs 100% supervision 100% of the time.



And not just supervision.  He needs special supervision.  Adult supervision.  Just the other day he ran after a car that looked like mine while at the play ground WITH AN ADULT!



He has very little concept of safety awareness.  And if he were to get into a pickle…he doesn’t have the ability to communicate that he needs help.  Which is why I say he’s non-verbal-ish.  The ability to say words is not the same as being able to communicate. 



Besides, even if no harm came to Trevy probably one of us (cough cough > Jonathan < cough cough)would have allowed ourselves to be coerced into a game of shooters or wiffle ball.  And the other would be silently fuming.  Steaming from my the ears.  Mentally wishing all sorts of evil on the other.  And oh there would be blows on the way home.  And you don’t want to be responsible for Jonathan sleeping on the couch, do you?



:: wink ::



How do I know all this would happen?  Because it has! And we’ve decided that we just can’t do parties and things.  Not now.  Maybe not ever.



This is our life with Trevy.



We like being married to each other.



So, pretty please with a cherry on top don’t hate us when we say no.



And when I say us…I mean all of us. All the Trevy lovin’ families out there.  Any family that is heart connecting with this post because they’re lived it too.



Don’t think we’re snobs.



Or that we secretly have a beef with you.



Give us a little grace.  And keep asking…



because you never know.  Maybe one day we’ll get all crazy on ya and actually show up.  With a side of potato salad too!  Maybe it’ll even be home made!  Whipped together between 20 second peekin’ out the window runs.





  1. Love this post...because I can relate. I remember the days when we stayed home - no dinner's out, no going to the movie theater, no museums, no baseball games, no outings with friends - because Sam just couldn't deal with the sensory input from such things. (Many times I would leave in tears after "get togethers" from simple exhaustion and even frustration...) Different whys, but the same protectiveness. It can be isolating, huh? But we do what we do because we love these guys!

  2. Very, very, well said. You described it perfectly. I am so moved by this...thanks for writing and sharing it.

    1. Thank you SO much! It's always a little weird for me to just spill my guts but it means the world when other moms (and dads) connect.


  3. Holy Crap! There ARE other people out there like me/us!!!!! I had 4 normal kids...then came 5. He is sooooo different! 6 is the same model as #1, basically normal on super sonic speed. But, 5..he gives me a run for my $ almost every day. He has a thing for hallways, driveways, parking lots. yeah. Those places tend to rev his motor and make him run. lovely. Picture the Walmart parking lot on high-noon Saturday. Yeah. Or a busy doctor's office, that's built like a frickin' maze. umm hmm. He has no fears. Loves the trampoline. Loves to run. Loves to play and doesn't understand what it means to be in trouble. Just yesterday, he saw me mod podge-ing. When I walked away...he mod podged his face, his legs, my stainless fridge, the floor and the counters. Two seconds. That's all it takes with him. He's my two second wonder. He's also known as the Bathroom Bandit. Don't ask. I'm just glad it's usually make-up and NOT poop! Love your blog, I'm a new follower!