Yo soy La Lay

adventures in family, faith, and Down syndrome

Wait for it, wait for it…

I’m lounging in a little bucket chair, feet propped on a kitchen step stool.  I have placed a padded car seat headrest to support my throbbing feet.  There are boxes all over the living room, no furniture, but our TV is up and running on an old end table and I’ve got a tall glass of ice water keeping me (mostly) cool.  I have learned in the past few weeks that we are at a point in life where chaos does not suit us well.  Last week was an epic cluster of rushing around to do God-knows-what in preparation for 49 different line items that were a Very Big Deal.

In this very moment, I’m feeling like there’s no chance that we will catch a break and we’ll just keep barreling down the road toward losing it.

But.

In all of the crazy, there’s-so-much-I-can’t-even-make-a-list, what-the-heck-is-going-on???, there is also bright – a new, perfect home that is exactly what we need… two beautiful, healthy little ladies who, in the stress of all the change, still adore each other… our own, happy, loving marriage (about to celebrate seven years running).  Bright.


The days before my summer sets in are like this – this year more than years past simply because of the move (and the stomach flu, because why not?).  The long stretch is coming, the days of evening bonfires and the annual Mommy Ellie Zoo Trip and all the fun that is our favorite season will be here before I know it.  So for now, I’ll just seek out the small reminders of our blessings, knowing that the big, deep sigh of relief is just around the corner.

Summer….. Come on, summer!!

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A day to catch up on life

We really put Girlfriend through the wringer today.  We have had a few days like that lately.  She’s a trooper, Miss Tessa.  She really is.

Two working educator parents means days like this – when we have a scheduled day off during the week, it means we have to jam pack it with all the appointments and phone calls and chores that cannot be done otherwise.  I’m sure that others outside of education must work this way too, maybe.  

Actually, I’m not sure.  I just know that sub plans are a pain in the rear, so for us, everything that can wait, does until we get a weekday off for some random holiday or break.

In any case, with Thanksgiving tomorrow, we double-booked therapies for today (yes, we know that’s not very nice) and then threw in a follow-up visit with her ENT (now that’s just mean).  I don’t know if we mentioned that we had a second set of tubes places in Tessa’s ears about a month ago… It was in the middle of our month-long advocacy-themed Down syndrome Awareness Month, so that little tidbit probably got lost in the shuffle.

(If you want my unsolicited, non-medical advice, I will tell you this: when an ENT tells you to get ear tubes, get them.)

I don’t know what Tessa’s hearing was like before the tubes, but I will say that almost immediately, we have experienced tremendous growth in her speech and general ability to react/interact.  There are some minor trade-offs (the whole crying-when-we-laugh issue is back), but she speaks to us nowand other people outside of the family can understand some of the things that she says!

(For example, no.  We can all clearly hear no.)

There are other words… a whole bunch of animal sounds, the number 2, hi and bye, please and thank you, papa, shh, up, and down.

For this, we are thankful.

But golly, it was a long day.  And even with the tubes, the hearing test was not completely clear.  A follow-up in a few months will hopefully give a better result.  Today, she passed “behaviorally”, which means that when they put her in the soundproof box, she showed behaviors that suggested she was hearing.  However, with the other test that somehow measures the function of her ear (note to self: look this up), she did not pass.  And so we wait three months and try again.

There are so many other tidbits to share about life lately.  So much is rushing around in our brains and on our calendar these days.  Those tidbits are for another time… for a day when I didn’t run through the maze of life responsibility that we did today.  For now, gobble gobble.  I wish you a restful Thanksgiving… and a day to check things off your list too.  May your children cooperate better than mine did. 😉 

On an unrelated note, who is this young woman and what did she do with my four-year-old??!  

 

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peace and quiet

So I’m sitting in a Target parking lot, feet up on the dashboard, windows open, stuffing my face with a spicy tuna roll.

(Sorry I ate sushi without you, Johnny.)

If you don’t believe me check out this visual proof.  Please note the “artistic value in my shot (read: it’s totally staged and I looked really silly taking it).  

I’m picking up my kids from their sitter in ten minutes and we are heading into a jam-packed weekend of wedding and baptisms and family (oh my!).  I will tell you, though I’m sure you can already tell, that life has been a little overwhelming in our household lately.  This little pause in my day, one tiny second to breathe in quiet and breathe out stress… It’s vital.

I’ll be 100% honest, I have hit a parenting wall in the past month or so.  My frustration with my communication barrier with Tessa is brimming.  My frustration with my soon-to-be four-year-old’s “selective hearing” is beyond overflowing.  I need just one of them to make some progress.

Or maybe it’s me who needs to make the progress.

Probably, it’s me.

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