Woe to You

By Cathy Jameson

The kids had had the opportunity to go out of town together, but when those plans changed, I thought of a few things for us to do in town.  We had a full afternoon of fun planned.  Our day would start with no appointments and no helpers helping us that day.  I love our helpers, but with no helpers coming over, we’d all be able to sleep in. 

Sleeping in is a treat, but you can’t sleep in if you don’t stay asleep.  Ronan decided to not sleep through the night on Wednesday night, so I cat napped through the night instead.  The relaxing start to my day didn’t happen.  It started with a jolt.  Like when he was a baby, I can tell when Ronan’s ‘happy noises unto the Lord’ are not so happy and that he needs help.  Around 1am and over the next few hours, he’d squawk out a round of laughter.  My eyes would open widely, my ears would listen intently, then my brain would settle knowing that he was okay. 

When the sun was just creeping up, Ronan got louder, and I could no longer cat nap.  I was now as wide awake as he was.  Ronan is usually content to read his books and look at his pictures, similar to the ones Kim mentioned in her recent post.  But that morning he was raring to go and was as happy as could be.  He was a little unsettled in finding a cozy spot, something he finds once he’s used the bathroom.  That morning, when one couch wouldn’t do, he’d get up and go to a different couch.  When one Wii game wasn’t keeping his attention, another one was attempted.  He’d been a little bit agitated the day before, but this was different.  After a few minutes, he finally settled himself on the brown sectional in the den.  With how content he finally was, I curled up on the other end of the couch and caught another cat nap. 

I’m convinced I never fully sleep.  I’m sure I didn’t that morning because before I woke up, I could tell something was wrong.  Jolted awake to noises that were not coming from where I knew Ronan had been sitting, I saw that he had just gone down on all fours on the floor.  Oh, no!  The last few times he’s done that is because of seizure activity.  I quickly got up, picked him up and walked him toward the other couch, the black one in the living room.  He had pointed in that direction, so that’s where we went.  With wobbly legs, as if he was standing on a boat being rocked by waves, we made our way through the house to the other room. 

Once seated, Ronan’s head turned quickly.  Then his eyes went blank.  The eyelids did some fluttering.  Then he jerked his head again looking up at something even though nothing was there.  Damn it!  Seizures.

The kind he’s experiencing lately have gotten more intense.  As absolutely horrible as they are, I am thankful that Ronan can feel them coming on.  He knows to find a cozy spot or to find me when they begin.  The last 3 times, I’ve happened to be home – with nothing on my schedule, when they started. 

This cluster was quick and took his energy away.  Once they were finished, he started to sleep it off.  It was only 8:30, way too early for us to be heading out.  The kids weren’t even close to being awake yet anyway, but if he bounced back, maybe we’d be able to do something later.  He had bounced back those other times, but I’d have to wait and see how he was feeling to know our options. 

The kids started to wake up around 10am.  

“Shhh, tiptoe.  Ronan’s had quite a day already…”  Understanding, they were quiet so that Ronan could continue to sleep.   One, two, three, four hours went by.  Ronan was up for a stretch between 11 and 12, but he stayed in bed under covers through the early afternoon. 

It wasn’t as quick as previous times, but Ronan rallied, and the kids graciously helped him as he stirred.  Earlier, we looked at what we might still be able to do.  We’d have to skip one thing, but we could go to Ronan’s favorite store and also grab a quick dinner out.  I’d promised the kids that they could go to the movies after our fun day out – but they’d be going without me since the movie was a psychological thriller with some jump scares.  They gave me a pass since they know I’m a big ol’ scaredy cat who doesn’t like those kinds of movies. 

If we timed our outing just right, I could still take the kids shopping and also get them to the theatre on time.  It was later than we expected to leave, but with Ronan, we made it out of the house for some fun, some food and for that early evening showing.  The kids were all smiles that night, Ronan, too.  I was beyond thankful for that. 

Each evening this summer, we’ve been reading the Bible.  That started because Ronan’s younger brother and I had wanted to do one study of one book of the Bible together.  We’ve read five books and have included the whole family in the study.  We sometimes simply read through the chapters, and other times we will stop and discuss the message.  The discussions are short but very worthwhile.  I’m also finding that oftentimes, the messages from the readings have been not so random to events we’ve witnessed or are dealing with.   

Since our schedules can still be somewhat all over the place, even though it’s summer, we facetime with whoever isn’t home.  We had been doing our family prayer time around 9:30, but if we didn’t set a timer, it would be almost 10pm before we opened the Bibles.  Readings got delayed, bedtime got delayed, and by the time everyone was tucked in, we were up way too late.  So, we were gathering an hour earlier.  That night, even though I’d caught another nap while Ronan slept after the seizures, I was ready for bed already, but it was 8:30…ring…ring…we were all on screen and we were ready. 

With everyone on, we began.  First the Psalm, then the next chapter in Matthew.  It was my turn to read Matthew 23:    

…Call no one on earth your father;

you have but one Father in heaven.

Do not be called ‘Master’;

you have but one master, the Messiah.

The greatest among you must be your servant.

Whoever exalts himself will be humbled;

but whoever humbles himself will be exhausted.

I stopped myself. 

I mean exalted! 

…but whoever humbles himself will be exalted.

I was so, so tired, so ridiculously tired, but I started laughing.  Then I couldn’t stop laughing.  It was one of those punch-drunk kinds of laughs that made everyone else start to laugh.  When I caught my breath, I continued to read.  The rest of the chapter were messages to the Pharisees …woe to you, you hypocrites…on the outside you appear righteous, but inside you are filled with hypocrisy and evildoing…you serpents, you brood of vipers, how can you flee from the judgment… Those verses brought me back to some of the emotions I felt earlier in the day – anger, regret, sadness knowing that some of my child’s issues could’ve been prevented.  Many I time I felt…woe to those providers who stood in my way to keep my child healthy. 

It’s exhausting this parenting thing!  I struggled that entire day.  How do I parent Ronan and the kids at the same time?  How do I parent them and also take care of me?  Some days, most days, I come last – that’s part of parenting, and that’s been okay.  With the kids’ help that day, I stepped away from Ronan while he was sleeping so I could finally take a shower.  I grabbed a quick bite to eat also, but I was back in his room as fast as I could.  When he was fast asleep, I sat in the hallway right outside his room.  I stayed there until he woke up.  The kids kept themselves busy and hopeful all day – we all wanted Ronan to be well again.  Holding onto hope and our plans, we all wanted him to join us if we got to go out, too. 

They’re older now, and the kids can surely take care of themselves.  But that day, they wanted me to be with them.  We’d made plans to be together.  We’d made plans to bring Ronan with us.  We made plans to have fun out of the house.  If there’s one thing they’ve learned the last few years it’s that we have to be flexible.  Being flexible paid off this time.    

That night, we prayed thankful prayers that Ronan was feeling better.  We prayed for a better day tomorrow as well.  I prayed for the kids, for our family and for some special intentions.  Prayers help see me through.  Lately, I’ve been leaning on them more than I ever have before.  Til my fears are gone…to remember that He’s leading me…and to always remain hopeful. 

Cathy Jameson is a Contributing Editor for Age of Autism.

https://www.youtube.com/watch?v=WW0VJxPqeRc

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