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It’s not that I have nothing to say…

15 Apr

…it’s more that my brain may be spinning out of control because there’s so much going on, coupled with the idea that wow, it’s actually spring out, and sunny, and things are blooming here and I’m convinced that the PNW is trying to seduce me with its charms by sending a pair of ducks to visit in my back yard.

seriously - ducks

seriously – ducks


The kids had Spring Break last week, plus we had a friend over from Ireland, and what the heck, the weather’s so nice suddenly, let’s have a bbq.  That’s when the ducks arrived as well.  And for better or worse – but probably hopefully just better – I’ve joined a couple friends and we’ve signed up for personal training at the local gym.  God help that nice young man who’s taking us lot on.

There’s also been a call to Poison Control (to learn that it’s okay to take 30 or so B12 vitamin gummies) and one dog who wandered off (but only for 20 minutes, and she made friends with a couple walking through the neighborhood with their dog) and the water pipe below all the giant landscaping boulders has sprung a leak, leading to this lovely view for now…

I'm referring to it as our duck pond.

I’m referring to it as our duck pond.



And then there was the last minute cancellation spot at the neurologist, so Maura and I went for the regular check-up visit.  The doctor must have seen that I needed more to deal with because he mentioned possibly doing a trial of taking her off seizure meds.  He was also kind enough to smile and note that I wasn’t probably ready to hear that.  Instead, we’re going to do an EEG first, see what that brain of hers is doing before deciding whether or not to try taking her off meds.

I can’t even wrap my brain around it. I think that she still needs it.  But I also think that this neurologist would be very good about listening to me when I say that, which is its own comfort.

We did have to go for a blood draw, which we haven’t done in years and were overdue in checking her blood levels.  The last blood draw we did was quite traumatic, so I let the lab person know and said “Yes, we might need an extra person.”

To those three women in the lab at Seattle Children’s Hospital – thank you.  Thank you for keeping the mood light and for telling Maura how good she was being even when she cried and howled, and to the one who totally distracted her when she said “Do you like the movie “Frozen”?” and started singing “Let It Go”.  I’m glad you all got to see how quickly Maura was over her trauma and her smile of relief at the end.

And I’m also grateful for the Starbuck’s located in the lobby where I immediately took Maura for a treat for being so very brave.

I still have to schedule her EEG, which will hopefully go a lot smoother.  But first, I shall finish my coffee.


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The report card

27 Mar

I have to laugh that the school sends a report card for Maura.  She’s getting straight A’s.

Granted, the “A” is for “Adaptive”.  But still, get me that bumper sticker, I’ve got a straight A student!

I haven’t been allowed to read the full packet they sent because Maura keep stealing it.  (And yes, they sent a multiple page progress report – the lengths this school goes to will never cease to impress me.) What I have learned is that Maura is still not great with numbers.  She can count, she can identify, she can get to 20 sometimes.  But she’s really only consistent to ten.

However, she has sight words.  A list of words she can point to, read by herself.  All the days of the week, and words like “socks”, “Mom”, “cat”, and “rectangle”.


And there sums up life with Maura.


My Girl Wonder

Running errands

17 Mar

In the past couple of years, Maura went from being a great little shopping buddy, to a taller balkier shopping fiend who threw fits when she didn’t get her way.

I realized a few things – like not take her out when she’s tired, or hungry (the girl gets “hangry” – so hungry, she gets angry), not to take her into really crowded stores as it’s system overload for her, and to make plans and reiterate them.

So yeah, I’m the mom telling the child “First we’ll do THIS, then we’ll do THIS.”

When we lived in Ireland, the girl had a 3-4 store tolerance at the big shopping centre we lived right by (the largest one in Ireland mind you, a nightmare at Christmas!)  Here, we can manage two stops at most, three can be pushing our luck.  Sometimes, two stops is pushing that luck.

But after going through all the factors, and basically starting from scratch with outings (as in “We’re going to go to THIS store and get THESE items and go home.”), we can manage without a big huge screaming scene in the middle of the store, testing my patience and physical strength.

Usually I manage to push through, deal with the variables, keep things going as smooth as possible, or realizing when it’s all going to hell in a hand basket, that it’s time to cut our losses and make a run for it. I’m so in the moment, getting through this one section of the outing, making sure she’s not distracted or is distracted or by me, I don’t stop to view things from another angle.

Tonight however, I had time for that view.  I decided (being a bad Irish American) to just treat kids to burgers and fries from Five Guys.  Okay, really, what I wanted was a big brown bag of chips with vinegar from the chipper.  But seeing as the chipper is now located across a continent and an ocean, Five Guys is the nearest solution.  Also, we needed milk, because some idiot woman didn’t grab a gallon while at Target five hours earlier.

Maura heard me taking burger orders and got excited at the thought of going out.  So I thought “Yeah, I can take her with – she loves Five Guys.”  Except I realized as we got to the car, she thought we were going to The Store.

AKA Target.


So I tell her the plan – grocery store for milk and a treat, then to get burgers and fries.

I was met with a resounding “NOOOOO!” then “Store?”



Yes, I kinda lied to the girl.

We pulled up to the grocery store and there was a moment of discontent, but I explained we were getting milk and a “treat” for everyone, do you want to pick out the treat for everyone?  She hopped out of the car and I grabbed her hand before she could wander into the parking lot.  I steered her into the store and down the soft drink aisle for the “treat”, got the milk, went to check out…


Yeah, some well-meaning store clerk put up the cardboard display for the not-yet-released “Frozen” DVD’s a day early.

By the check out we were at.

Kill me now.

Somehow, I got to explain to the girl who has no concept of time that the movie wasn’t out just yet, tomorrow, that we could get it tomorrow and she said “Morrow?”

YES! Tomorrow!!  We’ll go to The Store TOMORROW to get Ice!

“Morrow! Ice!”

We left the store happily talking about tomorrow.  And you bet your sweet patootie that tomorrow, I’ll be getting a freaking copy of “Frozen” if it kills us.

Then we headed over to Five Guys, which usually she’s out of the car before it stops (Okay, not really.)  And she was all happy about being there until I said she couldn’t bring the groceries in with us.

That lead to pouting.  And being balky.  And pouting while being balky.  I stood waiting for her to get over it.  She finally got out of the car, only to do what I call her “grumpy gargoyle impression”.  In a thoughtless moment of desperation, I offered her my phone.

She was all “Yay! MY phone!” and tucked it in her pocket.

Oh dear.

But we got in (where the super cool dude who I think is one of the managers or something and always remembers us yelled hi to her, and she waved and yelled hi right back), I got to order our food, and we waited for it all to be made…

…while Maura whined.

She whined like a grape in a press.

The phone wasn’t providing her with what she needed.  Which apparently was “Phineas and Ferb”.  I tried downloading a free game for the show, she didn’t want the game.


She found the video section…which was empty.



She didn’t like the game selection I had for her.


I started to crave cheese and grapes.  Because OMG HELLO WHINY CHILD!

I sat there, pondering the situation, and the energy it was sucking from me to keep me engaged and not irritated and going with the flow.  I knew why she was a whinging bird – she didn’t go to sleep on time last night, she was a mess this morning as I hauled her on the bus, she had a full day at school, and now we were waiting on dinner.  I could process that, appreciate that, but also, I realized that really – one 30 minute outing with her can be like a day at the zoo with a herd of kids.

Okay, maybe not that bad.

But it does take energy, sucks energy, wrings it out of me.  I spend every other minute making sure she’s fine.  Imagine going out with someone and having everything they do need to be supervised, have to constantly make sure they’re safe, having to step in to help or step back to allow them to do it themselves.  Every move you make you do so with someone else in tow.  Most people get it once they’ve had a toddler.  Now imagine your toddler never outgrowing some of their needs.  Imagine when your child was in preschool, how there really wasn’t a moment to relax because they might suddenly dart through the parking lot.

Imagine doing that for seven more years than the phase is supposed to last.

Imagine realizing that this may be as good as it gets.

The funny thing is – I consider myself lucky! I know that Maura, in the grand scheme of things, is pretty easy to go out with.  She’s pretty laid back, easily bribed, enjoys being out, enjoys new things and new people and new experiences.  She’s very mobile, she doesn’t require special equipment to get around, I don’t have to pack three extra bags of food or medical supplies, and best of all, she’s finally potty trained.

But as great and easy as she is, there is still those needs I have to fill for her.  All the little things, all the moments of not understanding, all the sideways glances we get from people because she looks so normal and acts oddly.  There’s always those moments when she’ll go pale, or spacy, and I don’t know if she’s got to poop or is going to have a seizure or is just plain tired, all I do  know is that we’re done, we need to make a run for the car.

It’s like being nibbled to death by ducks, and I may be doing this for the rest of my life.

Which is why I don’t stop to ponder, to mull over the details of my life.  Maura is such an “in the moment” girl and in many ways, I parent that way.  I’ve embraced the fact that we’re in this for the long haul, but I don’t have to think about that fact all the time.  Instead, I just deal with the little problems, like getting my phone back from Gadget Girl (which I was able to do easily when she set it aside for her bigger brighter crackTablet) and celebrating the fact that she might be grasping the concept of “tomorrow”.


Maura the Grumpy Little Gargoyle

Maura the Grumpy Little Gargoyle


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