Over the last year, words have not come easily for me when I think about Stevie.  I sit with my hands on the keyboard, ready to unleash some truth on y’all and instead, I run into a full mental block.

I want to tell you about his successes.

And I want to tell you about his challenges.

And all of the in between.

But my mind gets jumbled and overwhelmed.  I get reminded of all the other things I need to be doing.  (Today it’s following up on an appointment, getting him registered for next month’s swim classes, and scheduling flu shots.)

Simple enough.  And it will all still be there when I’m done writing, right?!

In some ways, so much is happening.  And in other ways, nothing at all.  Which is equal parts good and frustrating.  No news/good news kinda deal mixed with the slow, slow progress that makes it feel like we’re not doing enough.  It’s just hard to put the whole big picture into words.

Maybe once I jump in and start writing, it’ll get the juices flowing…  so here we go!

HEART
Looking great!  Stevie had his yearly checkup over summer break, and I thought for sure this was it.  2017 must be the year that we’d start talking about his next surgery.  But instead, his doctor casually said “We’ll see you next year!”  And I breathed a huge sigh of relief and practically skipped out the door.  Phew!

EYES
The saga of the eyes continues!  Stevie’s 4th eye surgery (more about that here) was a success and those eyelids have stayed put for the most part.  I think the right one gets a little droopy when he’s tired, but that runs in my family, so I’m trying not to worry about it too much.  However, there’s always something!  And this year it was his glasses, of all things. He got new specs with a new prescription after his latest surgery, and we were so excited to see his capabilities improve with good vision in both eyes for the first time ever!  But… about 8 months into it, I noticed his eyes crossing a lot, and he started looking OVER his glasses instead of THROUGH them more and more.  Turns out, not only has he had the wrong prescription this whole time, but the lenses were somehow swapped and on the wrong eyes.  I. Was. Furious.  All we could do at this point was fix it, but I definitely raged on the inside for a good couple days.  And it still makes my stomach turn when I think about it.  UGH.  What a freakin’ waste of 8 months!!!  We’ll see if there’s any improvement with the fixed prescription.

DEVELOPMENTAL PEDIATRICIAN / NEUROLOGIST
I last took Stevie to a Developmental Ped when he was almost 3.  I was trying to get a referral to see a neurologist all the way back then, but she strongly recommended waiting until Stevie was older for a couple of reasons.  Not only would he have to be put under anesthesia again at such a young age, but we were already getting all of the therapy available to us.  It wouldn’t really change anything.  Not that it will guarantee any changes now either, but Stevie is almost 7 (!!!!) and I know it’s time.  I’ve known it’s time for awhile.  But getting these appointments requires a lot of will-power and stamina so you don’t fall through the cracks.  And the waiting game is hard too.  We called in February to make our appointment to be seen in July!  It’s just a long slow process, bottom line.  But he was seen, and got his initial evaluation done.  It was fine.  He was mostly cooperative and I wrote down all of my concerns so I wouldn’t miss anything.  Even though I’m sure I did anyway.  In August, he had a follow up to do some cognitive testing and that was a total joke.  He basically refused to participate.  I felt really bummed out, until my husband wisely reminded me that “he wasn’t there to shine.”  And that’s true.  If we want Stevie to get as much help as possible, they need to see his true behaviors.  So now we wait again.  Waiting until November for test results.  And waiting a couple more weeks to hear when we can be seen by a neurologist.  They’ve also given me a prescription for more OT, PT, Feeding and Speech Therapy.  You know, to easily squeeze in to all of our spare time.

SCHOOL
Thank the Lord in heaven that this child likes school.  He likes his teacher and likes seeing his friends and even though he tells me he learned “the letter S” (pronounced X) every single day, I know there’s more.  His conversation skills are improving and he comes home singing new songs every now and then.  He does not like to work with me at home on writing or letters or coloring or crafts or anything, but his teacher claims he enjoys it in class.  So I keep hoping something is sticking — even if I can’t see it.

THERAPY
Most of Stevie’s therapy is at school right now (which isn’t saying a lot, as it all adds up to only about 9 hours/month.)  But as I mentioned, he does have a prescription for more.  Which is a big reason why we just quit ABA (behavioral therapy).  Well, we didn’t quit, but we put it on hold.  That therapy helped us in a lot of ways, and always felt more like parent training than anything else.  It taught me how to respond to annoying behaviors and come up with my own interventions for behaviors that seem unmanageable.  But it was also a time suck and not always realistic for real life.  Believe me, carrying around a clipboard to track when your kid is being an asshole isn’t the cutest outfit accessory.  But we did it for 2 years and gave it a valiant effort.  It’s not really over, I think it’s an ongoing process — we just won’t have someone coming to the house every week telling us what to do.  And now that it’s on the back burner, I’ll work on getting our insurance in line and finding new Occupational, Physical, Feeding, and Speech therapists to help Stevie outside of school.  He still does social development therapy (play group) once a week and swim class twice a week.  And I’ve debated getting a tutor as well.  But we have to just see how it’s all going to play out.  He’s still just a kid after all!  We need to leave some time for regular life and play time too.

DAY TO DAY + LIFE SKILLS
This is the hardest stuff for me to talk about.  The nitty gritty of the every day.  It’s not as straight forward as medical facts or school grades.  It’s more of a constant up-and-down-heaven-and-hell-roller-coaster-of-emotions-and- joy-and-sadness-and-horomones-and-how-did-we-get-here-and-wtf-are-we-doing type thing.  Sound familiar to anyone??  I know we all have those days.  And I think the hardest thing to remember is to honor my feelings, whatever they may be in any given moment.

Am I annoyed because he says he can’t turn on a light switch by himself?  Sure.  It is annoying.

Am I elated because he put his right shoe on without any help for the first time?  Absolutely.  It is great!

Am I tired from the anticipation of a busy week?  Uh-huh.  Yup.  It is tiring.

Am I over playing Hot Wheels for hours on end?  I’ll let you take your best guess.

Am I out of my mind because he asked why one too many times?  Lord yes.

Am I exploding with love because he gave me a proper kiss for the first time?  Beyond.  Just beyond!  It is everything!

Up.  And.  Down.  All.  Day.  Long.  It is a real effort to take his challenges in stride and teach him how to function at a basic level, without pushing so hard that he becomes frustrated and doesn’t want to try.  This, while also enjoying and embracing the little graces we are given.  I have to remind myself daily (hourly) that he is only human.  And I am only human.  And together we are two very, very imperfect humans just doing the best we can.

Some days it goes well.  I’m up for it.  I can do it.  And other days, well.  The challenge of it all feels insurmountable.  The weight of the world. It’s too big!  It’s too much!  I can’t, I can’t, I can’t!!  I’m managing his emotions along with my own and I fail often.  My anger is real.  And I don’t even know who to be angry at.

My husband and I talk often about what Stevie will be like when he’s older.  The truth is, we have no idea.  But we do know this — no certain job or any amount of money or a typical life in any sense of the word can guarantee happiness.  So on some basic level, that’s all we hope for. That no matter where he ends up, or what life skills he develops, that he will be happy.

And even though I know certain skills are essential for survival — patience and love will surely take him further in life than any amount of skills I can teach.  I’m honestly not that skilled anyway!  Haha.  So we go slow.  Which is hard for me.  But I go with the hope that eventually it clicks.

After all, that’s how everything he’s learned so far has felt — impossible!  Until it’s not.

loves,
jaana