Yo soy La Lay

adventures in family, faith, and Down syndrome

Rattled.

The man seemed nice enough while we were waiting for the elevator.  He was clearly a pharmaceutical rep, wandering around the medical offices, selling his wares.  He asked Ellie her name and, miracle of miracles, she shared it without bursting into tears.

As we entered the elevator, he furrowed his brow and said, “I don’t mean to be forward, but does she have…. problems?”

Oh Lordy.

“Oh!” I replied, “She has Down syndrome.”

“Well, that’s just… I mean, two people… You are normal, no issues, it isn’t right that you would have something like that.”

You son of a bitch.

Grace, my brain told me, give him grace.  He doesn’t know.  He cannot know.

“We love it!” I exclaimed, probably a little too brightly.  Tessa burst into tears.  He was quite clearly baffled and muttered something about how she’ll never be….  and then he stopped.  I continued to put on the cheerleader face and explained to him about how we have high hopes for her and the therapy and she is doing great.

The man literally ran off the elevator when the doors opened.

This is what I don’t understand:  Why is it acceptable to put any child into a box marked undesirable?  Why assume that anyone, but most especially an 18-month-old baby, is completely incapable of a valuable life?  And why the hell does it matter if she ends up smart or high-functioning or independent??  She very well might, but really, if she is happy… and believe me, she’s happy… I care about nothing else.

I live in an ivory tower of sorts, with loving supportive family and friends who genuinely follow our lead when it comes to raising our little lady.  If they feel anything to the contrary, we are blissfully unaware.  The crushing reality of how others around us perceive this life, just for tonight, has knocked me to my knees.

But just for tonight.

Tomorrow, the work continues.  Tomorrow, fresh-faced and perhaps well-rested, we carry on with the hope of acceptance and of inclusion and of love.  My prayer tonight is that he, that unsuspecting man in the elevator, is as rattled as I am.  I pray that we opened his mind and heart just a little bit.  I pray that Ellie remembers her mom’s response more than his words to me.  And I pray that somehow, we have made a little tiny difference.

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Little tiny boxes, big fat dreams

When we bought this seemingly giant townhouse, we couldn’t imagine how we would ever fill it.

We lived on hand-me-downs, quite literally, for quite some time.  A futon that dipped in the middle almost to the floor, a loud floral print sectional sofa draped with bed sheets to tone it down… a mishmash of his life and mine and everyone else’s came together to make Home.

New things trickled in.   We bought a cheap kitchen table that we wouldn’t use consistently during mealtime for well over a year.  A shiny new stand mixer as a wedding gift, a bedroom set, a new sofa.  There was a wine rack purchased from our elderly neighbors on a whim, holding fancy wine given to us by dear friends as a wedding gift, and more barware than any other home I’ve ever visited.

Wardrobes purchased, wardrobes replaced…  Elastic waistband maternity clothes lined the master closet, then drawers full of little tiny onesies in pink and purple and sparkly loveliness.

Piles and piles of books fill shelf upon shelf.  From infant swing to exersaucer, pink plastic Big Wheel traded for a Disney Princess big girl bike, there are toys in every single room.  Camping gear and Christmas decorations are stacked up high in the garage.  Furniture for one child doubled, but try as we might, we couldn’t stretch the space.

All of the things are slowly making their way into little tiny boxes, ready for The Big Move.

Can I just say…. there is so much HAPPY here.

The tiniest little corner of my heart worries that we will jinx it, moving out of these lovely little cramped quarters.  But the dreams… the big, fat, hazy dreams… they keep us packing.

This little love makes it worth every piece of bubble wrap and packing tape.  She is the one teaching us what dreams are all about.

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18 months

Ok, that’s enough cranky already.  Yes, The Big Move is daunting.  Yes, spring time has brought mass chaos.  Yes, my patience has been tried beyond its usual limits.  But let’s be realistic.  We’ve made so much progress that really, amidst all the chaos, there is still so much joy.

I don’t even remember the last time I shared a family update.  As this outlet is generally meant to be that – a place for updates – I’ve certainly dropped the ball.  So here you have it:

John and I are making our way, slowly but surely, to the end of another school year.  We both took on leadership roles in our buildings this year and while challenging and new and definitely an adjustment for me, the year has been revitalizing.  And we had a really great time together at a family wedding recently!

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However, we are rather boring.

The children though… oh, the children.  They are, as I tell anyone who asks, wild and crazy.

Seemingly overnight, Ellie went from scribbling haphazardly all over coloring books to this:

Mike Wazowski from Monster’s Inc, drawn from memory

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Our family (there was “no room” for Daddy)

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A tree (clearly, I hope)IMG_8104I hear that those are pretty good for a three-and-a-half year old (though she is now getting much closer to FOUR than I care to admit).  We have some artists in our family (especially my mother in law) so I’m sure that she could have some artistic talent.  I’m not sending these off to the Louvre quite yet, but hey, if the kid can draw, that’d be pretty cool.

Ellie was also in the wedding that I mentioned above.  She was the sweetest cutest little flower girl.  Did she fall asleep in the salon chair?  Yes, she did. Did she cry going down the aisle?  Yes, she did.  But did she look lovely during the whole shebang?  Yes, quite lovely.

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Tessa, while still very much a baby in a lot of ways, has catapulted herself toward toddlerhood.

We recently had some tests done on her eyesight and hearing, both of which have come back without concern.  While her SLP (speech therapist) was concerned that she might not be hearing everything that she should, we know that she has an ear tube that is working its way out of her ear (as they usually do after 12-18 months) and it is partially blocking some of her hearing in one ear.

Tessa loves (LOVES.) to babble.  Usually, her intonation makes it sound like she is speaking in long sentences of gibberish.  There is a lot of emotion in her statements.  We get a good laugh out of the angry Tessa, as we are quite sure that if she had words, they would be quite unkind when she’s upset.  We have been working more on signing with her.  Ellie loves signing and always asks how to say various words in sign.  Tessa has just a couple signs – more, eat, daddy, and play (what more do you really need??).  We are working on bedtime, please, thank you, drink, potty, Mommy, Ellie (we use the sign for E, but shake it like play), shoes, and of course, NO!!!

Very often, I have moments where I think “wow, she is absolutely nothing like an 18-month-old.”  And then sometimes, she does things like this…..

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…. and I’m reminded how she’s not entirely different from her typical peers.  That cabinet had been closed, by the way.

Tessa crawls like a champ.  MAN is she fast!!  One of her favorite things to do is to hold a block or other object in her hand and race across our new laminate floors.  She LOVES the loud bang bang bang of her little hands as she moves.  We are working on getting her to bear weight on her feet.  She fights it most of the time, but today, when John was giving Ellie her bath, Tessa was so desperate to see what was happening in the tub that she pulled herself right up to her feet.  SO exciting!!!  We have her wearing a SPIO suit on a fairly regular basis (supposed to be every day… realistically, it’s like 2-3 days a week) to give her more body awareness and support.

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What I love the most about her right now is the budding personality.  So far, Tessa is a little shy, but sweet as pie.  She just loves to smile and laugh.  While she is usually contended to roam around the house exploring, nothing makes her happier than to have the full attention of one of us or, most especially, her sister.

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Did I mention that she gives kisses now?  Or that she got her first haircut?  Or that she can eat real table food?  And she kind of drinks from a straw??  Have I shared that we finally moved up to 12 month clothes?  Or that turning the pages on books makes her squeal with delight?

We’ve been busy.

In two weeks, school will be out for the summer… ok, three if you count my extended days.  I can promise more updating as we take our deep summer breath.  Get excited.  Summer is going to be here before we know it!

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Mothers’ Day

Maggie is asleep on the couch right now taking a well deserved nap.  She has no idea I have taken control of her blog right now, but I wanted this to be a surprise for her.

When Maggie and I were first dating I remember people used to ask her what she did for a living.  She would tell them that she was a teacher and they would immediately say, “So what grade do you teach?  I bet Kindergarten.”  She would laugh and respond, “Oh, no…I couldn’t ever teach little ones, I teach high school.”

It is quite funny because for whatever reason, she looks like a kindergarten teacher.  She has a warm smile, she’s kind, simply stated: she looks the part.  But Mag is no kindergarten teacher.  She is blunt, sarcastic, even stubborn.  I am aware the last sentence sounds like criticism, but you need to know these are some of her best qualities.  And what’s best is she knows she is not meant to be a kindergarten teacher.  She appreciates teaching older students how to think critically and how to enjoy language and culture.

Being self-aware, Maggie always worried a bit about her personality and how it would blend with parenting in the future. She would say that she didn’t think she was very good at dealing with small children.  In fact, she even slightly worried about what kind of mom she would be when she had children of her own.  Despite my response to her that she was overacting, she believed in her heart she wasn’t the prototype mold of a sweet, nurturing, self-sacrificing mother.

Skip ahead several years and I have some interesting news to report.  Ellie is here…so is Tessa, and Maggie is the prototype mold of a mother. She is kind, sweet, nurturing, self-sacrificing…and she was even able to keep her bluntness, sarcasm, and stubbornness.  (Coincidentally Ellie has ten times the amount of bluntness, sarcasm, and stubbornness which has provided you readers with endless hours of blog entertainment as the years continue to pass.)  I know it has taken me a long time to get to the point, but it is this.  My wife is an amazing mother.  She is the type of woman I hope my daughters are like when they are adults. She loves furiously, she guides and helps them understand right and wrong, and she advocates for them in a way that makes me in awe of her.  This is not hyperbole, it is the truth. She is an amazing woman who deserves more than just one day to celebrate what she does for us.

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So on this Mothers’ Day, I want to thank you, Maggie, for everything you do.  And when it comes to your fears about motherhood way back when…you were wrong and I was right!  Sorry…I couldn’t resist that little parting line. I love you Mag, you are amazing!

Also, Happy Mothers’ Day to my mother, who I love so much! You’re the best, Mom! Happy Mothers’ Day to Mom W…you raised a wonderful daughter and you have always been so kind, loving, and thoughtful toward me!  Finally, to all the mothers out there, have a wonderful day…you deserve it!

Happy Mother’s Day!

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my mom = lovely

I have the most lovely mother.

Really, as I’ve let this post roll around in my head throughout this week, it really boils down to this – that she is beatifiul, inside and out.

There are so many parts of life that are a blur, fleeting moments whizzing past like signs on the interstate.  Milestones… family gatherings, parties, proms, birthdays, graduations, showers, weddings… they are all there, stored in my memory.  She has been there.  And in the most pivotal moments, her calm and quiet presence has been the most influential on my own journey.

Through all the angsty teenage years, my independent spirit surely causing a gray hair or two (or several… we weren’t the most easy kids in our adolescence), there has only been gentle guidance, support, and kindness.

In the very first phone call home after a bad break-up that should have happened long before, while her own heart surely leapt for joy on her end of the phone, she quietly reminded me that all will be well.

In the first meeting with the man who would someday be my husband, there were open arms and excitement…. pure joy.

In the slow and hazy moments following Tessa’s birth, while she surely felt as panicked, nervous, and overwhelmed as we did, there was no mention of anything but love and excitement for our new journey.

She is, quite simply, the most selfless person I know.  How blessed am I that she is my mom! 

For the hell we have raised, the messes in the living room, the kitchen cabinets left open, the empty fridge after a whirlwind visit, the crying children at the dinner table, the far-from-perfect everything we try to do… We love you for always loving us.  🙂

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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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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….

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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…)

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