waiting room days (the readable version!)

Kids these days.

Have then no respect?

I mean...she knew we were on the longest healthy streak. Possibly ever. Or at least since our family bumped from one to 2 kiddos.

But did that stop her?

Oooooooooooooh no. She had to go and get the croup!


Thank goodness Dr. Pedi was running on time today. So it was a relatively quick in & out.

Because to put bluntly...Trevy and waiting rooms don't mix. Or rather...mommy and Trevor and waiting rooms don't mix! Especially with a hacky clingy binti hanging from my leg.

Trevy would be in his glory if he were unleashed in a doctors office. Any office. He's not a picky guy.

I was literally drenched in sweat by time Dr. Pedi made her appearance. I hope she appreciated the fact that I'd successfully prevented Trevy from slamming the door more than 3 times. From tearing every last shred of that paper roll off the table. Cause his curious fingers were positively itching to rip it up into a million little pieces to be littered all over the room. Yes...I would like to pause and express a heart felt thank you to Mrs. OT for that one! Oh...and unzipping too! Now it's impossible to keep a coat on the kid! But back to the scene at hand. I was not able to catch him before climbing up the chair and pretending it was a trampoline. But I did successfully pull the scope from his mouth and wipe the drool off before she noticed. He opened every drawer. Switched every switch. Ate two stickers. The glittery kind. Spilled all the cheerios. Oh alright...so he almost spilled all the cheerios. There were a couple left in the bowl. Which upon discovering were promptly thrown at his sister. And all that occurred in 10 minutes or less! Cause you see...Trevor doesn't know the meaning of attention span!


It's impossible to carry on any level of real conversation when Trevy is running free. Which explains why I don't hang at the playground chatting up the other young mommies. And also why I was bouncing him on my hip. Switching sides often. Because 31 pounds of squirmy wormy toddler gets awfully heavy awfully quick!

Somewhere during the 3 nights of steroids and steamy showers lecture Trevy decided smacking my head and yanking my hair were no longer fun. And moved on to his new pastime. Sticking his fingers down his throat until he gags.

Yes. Gags. On purpose. He either thinks my freaked out reaction is hysterical or he enjoys the sensation of almost barfing?

Either way...


I happen to have a very sensitive gag reflex myself. Just typing about it makes my tonsils tickle.

Dr. Pedi watched with a slightly horrified expression. I tried to laugh it off with at least he's not picking his nose to watch it bleed! There was that awkward moment when I was trying to shift him into the mommy straight jacket position and she was trying to find the appropriate doctoral response.

Well...you know...he's just doing all those one year old things...

She let her voice trail away at the end leaving the rest of her thought lingering in the air unspoken. But deeply understood. And suddenly I saw an image reflecting in her compassion (or was it pity?) filled eyes. Me...more haggard than ever. Sweating and wrestling a now 60 lb elementary aged Trevy. So he couldn't dervish whirl the place like he was now.

All those one year old things.

Things he should have already transitioned through. But is just now discovering.

Parents make it through the baby years because they end, you know.

Don't get me wrong...

I am thrilled that his body is free from all day seizure saturation and now capable of exploring. All day. Even when his seizures were at their worst Trevy was curious and active. But he napped for two hours twice a day. And would sit contentedly in a stroller or on a lap through clusters lasting 10-30 minutes in a row. Several times a day. So wiped out at the end that snuggles were worth more than the cost of curiosity. Because constant seizure fighting is hard on little growing bodies. It's very clear to see now just how much energy...



was being stolen from him by the Monster.

And now that the Monster is tamed. Mostly. We're enjoying Trevy unplugged. 31 lbs of unplugged 3 year old boy. With the cognitive impairment left by the Seizure Monster's reign. And his little seizure free half brain is trying like crazy to make up all that lost time. And then some.

Which can only mean...


I wrote in my journal recently...

If seizure saturated Trevy was hard on the heart...

Seizure free Trevy is most definitely hard on the bod!

Listen...he may be cute but his exuberance is exhausting!

And exciting. We have certainly seen some developmental gains post surgery. In fact...

Some days I let myself go a little crazy and strip away all the what-if worry and swim in the Hope that Trevy'll be the one. The miracle kid that over comes all the odds. And I'll write a Hallmark Hall of Fame script. And lose 50 so I can star as the me I see in my head. And he as him!

Trevy's little mug is so delicious that it's easy to miss his struggles on a surface deep once over. I have always said that his greatest asset (the cute face) is his greatest weakness (most people can't see past the cute face). But those that spend any length of time with him. Trying to teach him. Care for him. Go to the play ground with him. Therapy him. Those people will totally understand what I mean when I say...

But then there are waiting room days. Days when his 31 lbs of unplugged energy wipes me clean. But not him. And he's grinning at me right before booking it in the opposite direction. Towards a no-touch! Days when his baby-ishness is not easy to manage. At. All. Waiting room days find me hoping like crazy that his little cortically malformed (remaining) brain lets him just reach the next milestone. One foot in front of the other. Just one more... Waiting room days have a way of inducing discontentment. And why me thoughts. As I chase Trevy back and forth trying to prevent him from opening the bathroom door on little Johnny's mommy and/or whacking the fish tank to watch the water shake shake shake. While his peers (including his siblings) all play in a peaceful organized fashion. Like typical kiddos naturally learn to do.


But I remind myself often...

it's always easier to live someone else's life.

That's a lie, you know.

This craziness is mine to live. Not by choice. If I were doing the choosing Trevy would be whole and we'd be in the Bush still. But it has been Given to me. For a reason I am not capable of understanding. We each of us have our raziki (rah-zee-key). Loosely translated Swahili for our lot in life. The Hand we've been Dealt. The Gift we've been Given. I always liked that word. And I cherish my Gift. My family. Trevy. And I am trying daily (some are easier than others) to Trust that all things are working together for my good. I just hope all this toddler chasing is a passing phase. Or at the very least that it would help me shed a few pounds before swimsuit season!


KC's Mama said...

WOW Danielle. That sounds exactly like KC. He is a three and a half year old stuck in a one year old's body (In many ways...namely behavior!) It is so exhausting keeping up with that kind of craziness. I have to have someone go with me to any long appointments because I simply can't control him and do all the other stuff too. Partly that is because KC is violent, and he will throw anything at anyone, and kick, bite and hit.
So anyway, my point is...I can empathize with how hard it must be for you!!

Praying for strength for you and calmness for
Trevy : )


Lisa said...

The kind of exhaustion that comes with wrestling with a kid is unreal. My heart goes out to you! My greatest hope and also belief is that this developmental phase will pass as he moves on to bigger and better things. I know it's probably no consolation now...but hang in there mama.

Anonymous said...

I was afraid the "run Mom ragged" stage would never end. We're now at the point that we are somewhat functional. I can now go to a doctor's appt and talk with the doctor while Ryan plays with his DS:-)

We haven't mastered shopping yet, but I can do a quick trip if my daughter comes and keeps Ryan entertained.

Tonight we did our first uneventful walk in the neighborhood. He stayed next to me the whole way and did not sit in the street or run away.

My boy is growing up! Trevy will get there, too. A few years of this can seem like a lifetime though.

Erin M.

Adesta said...

Dear Lord Danielle....

I can't begin to imagine what it's like to be you.

While I'm dealing with chasing Kym around all day long on weekends and getting her out of messes that she has created, at least I can say that it's because she is at that age...that 1 year mark. *yes, it's really been a year already* I can't imagine having to do this all with a 3 year old.

You truly are a SuperMom. And you wear that SuperMom costume with grace.

Sophie's Story by Elaine said...

I feel for you. I really do. It takes every ounce of my patience to take Sophie out in public with me. And when I say public...that is including anything that requires steping out the front door.