Yo soy La Lay

adventures in family, faith, and Down syndrome

Definition #3

 We re-did our little “office” nook in preparation for The Big Move.  It’s got a cute little bookshelf and cute little chair and it’s incredibly cozy.  While it is not ideal for blocking out the noises of the chaos in our home, it is a partial escape.  I’m still tuned in to what everyone is up to, but I just put my feet up and listen.

I find myself trying to spend a lot of time up here these days.

Somewhere in the mix of this…

and this…

 and this…

and this…

there needs to be peace.  
It is hard to come by right now.

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The Talk

We had to have The Talk with Ellie.  We weren’t ready for it, but suddenly, in the middle of a quiet car ride home, she blurted out the question we’d all been waiting for…  Sort of.

“Hey guys?  Why do you all think you hafta give Tessa Down syndrome?  She’s FINE!”

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99% of the time, Ellie picks up on every. single. thing. that is said in her presence.  This is not very convenient, believe me.  She has asked about adult conversations from the radio, commercials for random products (you need to buy Oxiclean, Mom!). gossip that I’ve discussed in the company of dear friends… she is always listening.  Because of this, it has been very odd to us that, up until now, she has denied ever even hearing the words “Down syndrome.”  Occasionally, we have asked her if she knows that Tessa has it or what it might mean, but she would always furrow her little brow and give us a look like we were crazy.

I don’t know what set the wheels in motion in her head that night, but the floodgates opened.  We talked about Tessa’s 47 strings and how the rest of us only have 46 (thank you, Becky Carey!).  We talked about how she needed a little extra help from her therapists, but that yes, she is fine.  We assured her that Tessa would always have Down syndrome and that was OK.  It was the most random, meaningful, (un?)important 10 minutes that we have had with Ellie in her not-quite-four years.

And then she followed up by asking us when we were going to stop to get her Happy Meal because she had been waiting long enough.

Love this kid.


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On trusting one’s intuition

Sometimes, I’m really good at listening to my intuition as a parent.

And sometimes, there are moments like last night.

I should have heeded our sitter’s warning when I picked up the children.  I always love the moment when I arrive to get the girls after a long day of work.  All of the kids come wobbling toward me, a little bit like Children of the Corn, babbling some nonsense about their day, all at once, none of it the least bit coherent.  “They are wound up today!” she tells me.

I got this, I think to myself, with no concern over my impending night of single parenting.  Ellie had been asking us to order pizza all week.  I’d pop in a movie, call up Vita Bella, and put the girls in bed a little earlier than usual.  No problem.

In this moment, I made my first fatal mistake: when Ellie wouldn’t put her shoes on and I was anxious to get home, I told her that I had “secret, fun plans” for us.

Through a series of unfortunate events, mostly due to the fact that Ellie had given up on her burning desire to eat pizza and still wanted “secret, fun plans,” (which I didn’t actually have), we ended up at Red Robin.  I knew it was a bad idea.  Every little voice in my head screamed “No!  Not tonight!”  and I ignored them.

If you aren’t familiar with Red Robin, it’s a hamburger joint that has generally been a really family-friendly environment (read: it’s incredibly loud).  Recently, our Red Robin has gone through a little remodel… they now have three “unofficial” sections: the adult (bar) section, the section for Parents Who Have It Together, and the Frazzled Parents and Loud Parties section.  There is a glass wall that separates the latter two sections, most certainly so that the Parents Who Have It Together can enjoy the show on the other side of the wall.  I’ll let you guess where they sat us last night.

Frazzled Parents, unite!!

In the instant that we sat down, Tessa decided that she was starving.  We have entered a phase of life where she can’t well communicate her needs, so there is a lot of growling.  Yes, growling.  Loud and forceful growling.

Three seconds later, Ellie told me that she needed to go to the bathroom.  Now I, as a parent with great foresight, knew that Ellie loves to check out public bathrooms and not actually pee, so I made her go before we left the house.  So, when she asked, I calmly told her that she would have to wait until we got home, feeling confident that she had just emptied her bladder.

Even after three portions of dinner and several soft pretzel bites (which I later found stockpiled in her cheeks and the roof of her mouth), Tessa continued to be starving.  She had had enough of the crummy, unsupportive high chair.  Ellie’s crayons were dropping all over the floor.  There was a lot of ketchup everywhere.

Before I knew it, Ellie was standing on her chair, announcing to me (and what felt like everyone in a five-table radius) that she needed to go the potty right now or the poop was going to come out of her butt.

I really need to listen to my intuition more often.

Our rockin’ night wrapped up soon after we go home… a lot sooner than Ellie would normally go to bed, in fact.  Later, I dozed off on the couch, only to be awoken by chubby little fingers poking at my cheeks and nose.  Tessa had been sitting on my lap, drinking her last bottle of the night, and was looking for more.  She smiled up at me with those little crinkly eyes and for just a moment, the events of the Great Red Robin Fiasco were a distant memory.

I can’t wait for tonight’s round two adventure….


Pass the fluff, please

What I really need right now is a goofy little novel to read, a chick-flick-in-print, if you will.  A little Meg Ryan, a little Hugh Grant… nothing too heavy, no drama, no political nonsense, just some fluff to breeze on through.  Please, nothing thought-provoking and heaven forbid it be the least bit relevant or timely.  No thanks.  Not now.

Before the children, I gobbled up books on my Spring Break.  In the summer time, I would go through stacks and stacks.  Back then, I thought it was important to buy all the books that I read.  John and I would spend hours at Barnes and Noble on a Tuesday afternoon, each emerging from our own favorite area of the store with a pile of books under arm.  We’d talk briefly about what we found, both feigning interest in the others’ selections, without any actual intention of reading them.  

(The library gets a lot more of my business these days.  I’m the patron who uses up all her renewals and then ends up with a $2.00 fine because even after 6 weeks, I’m not done and to be honest, the book is lost somewhere at bottom of my diaper bag anyway.  But I digress…)

When Ellie was born, I took up crossword puzzles.  Baby Brain had taken its toll on me somethin’ fierce and I thought that maybe if the crosswords worked well for senior citizens, then they might help me stay sharp also.  Each night before bed, I set out to solve the puzzles in the Easy section of my books.  I don’t know how well they work for memory in the over-65 crowd, but I can tell you that my brain still requires a lot of post-it notes to function properly.

Then of course, After, the bookshelf was filled with books about Down syndrome.  It is fascinating and enriching and important, but sometimes, I get so saturated with Down syndrome and non-fiction and and life that I just need to take a step back.

Our Spring Break was full.  So full.  We are prepping the house for the big move.  I painted a lot.  John put down a floor.  We had the help of our tremendous family.  On the eve of a Monday back to work, I’m reeling a little bit – I’m not quite sure what happened or how it happened or when our actual ‘break’ might take place.  And this is why I just want light, fluffy, nonsense.  And maybe a glass of wine.  Please and thanks.

(Cuteness in photos coming soon…)