Yo soy La Lay

adventures in family, faith, and Down syndrome

Four years of BIG

Me: Are you going to be a new person when you are four tomorrow?

Her: Oh yes, a whole new person!

Me: Well, why?  What can you do when you are four?

Her: Oh, almost drive a car or van or anything that moves.  And go to the city, but not work.  I’m too young to work.  And I can chop down trees.  Tomorrow though.  Not today.

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Slow down, my little love.

Before she was born, I sat in my sister-in-law’s living room, watching my nephew Jack run around in circles and thought that I wasn’t quite sure if I could handle being a mom.  She assured me that the baby wouldn’t come out of the womb quite as energetic as her lively two-year-old…  slowly but surely, she would grow into toddlerhood and I would be ready for it because I would grow with her.

She was right.  Baby Ellie crammed herself right into our little life – never snuggling in, but making her presence known in every moment with coos and smiles and belly chuckles.

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By the time she was one, we referred to the Ellie that appeared between 5 and 7 PM each night as Tornado Ellie.  And while I would never call her rambunctious or wild (well, maybe a little wild), Ellie’s infectious energy has kept us melting onto the couch after bedtime for 1,460 days now.  Her first word was cuckoo.  From there, the other words poured out… tee-coo (thank you), hello, tree, papa, amen, beer…  Ellie innocently delivers a well-timed punchline to every moment.  She is a pint-sized comedienne.

By two, “clumsy” had become her middle name.  Even now, as I watch her sprawl across our living room floor, I can’t believe how, for as many scrapes and bumps and bruises she has, there have been no broken bones.

Knock on wood.

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As a three-year-old, we have grown into parenting her big personality.  There is nothing meek about anything that Ellie does.  She LOVES and she’s ANGRY and she’s THRILLED and she’s BIG emotion in every moment.  Life with her is vivid and bold and full.

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We love you, Ellie Bean!  Happy fourth birthday.  I can’t wait to keep growing with you this year.

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We interrupt this regularly scheduled program…

 
ūüėÄ ūüėÄ ūüėÄ

That is all. 

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Life, lately… June 2015

It’s been quite some time since I just posted cuteness… ¬†so, here we go!

The girls rode in a cart together for the first time:

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My mom and Tessa are so photogenic…

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And I decided to join in the fun!

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This is our “Tiger Family.”

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Ellie got a new bike helmet so that she can ride her bike.  She insisted on wearing it around the store.

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Daddy has been practicing his hair combing skills.

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Ellie is so very excited to spend more time with her cousin this fall when my mom watches her. ūüôā

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Don’t you just love gaggles of small children??

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Tessa is not impressed with most foods these days.  Who can blame her?  She just got FOUR teeth in at the same time!

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When there are a thousand boxes around the house, you have to have a little fun!

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Well, fun until it isn’t so much fun anymore…

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Tessa is getting so big!!!

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It’s been raining a TON, but we decided to brave the rain and take a little bike ride anyway!

IMG_8542These last three of Tessa are from today… ¬†I can’t wait to print them to hang in my office. ¬†She is so pretty! ¬†ūüôā ¬†
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Zoo Day, Take 2

There were three distinct differences between the zoo trip that Ellie and I took last year and ours today.

1. No more diapers.

2. No more stroller.

3. No more nap on the way home.

Because we no longer need diapers, I spent as much time checking out the potties as I did looking at animals. ¬†Just sayin’.

We started with our usual breakfast:

During our meal, Ellie told me all about the animals that she would like to see.  We had been watching Wild Kratts in the moments before we left the house and by odd coincidence, it was all about an African Safari.  The last scene that we saw was a slide show of sorts that flashed pictures of at least half of the animals that we were going to see.  Because of this, I spent most of the morning explaining to Ellie how the zoo and Africa were two different places.   In any case, we beelined for the zebra and giraffes first, her two favorite animals.  Much to her dismay, the zebra did not pee while we were watching this year. The giraffes were so close to the fence though that the zebra was quickly forgotten.

We saw the Penguins eating their breakfast…

And, since this is the trip where we go crazy and do all the things that Daddy always says “no” to, we had our caricatures drawn by some high school kid saving money for a trip to Costa Rica. ¬†Ellie was totally entranced by his work.

As usual, we saw the dolphin show and ate a really overpriced lunch.  We spent a good deal of time sitting by one of the fountains taking mommy/daughter selfies and debating whether the fake floating crocodile could eat the fake hippo on the other side of the pool.

We started at the zoo at 9:30 and by 1:00, I was exhausted. ¬†Not Ellie! ¬†Onward she lead me, to seals and rhinos and past the bears again. ¬†We visited a little pet gift shop just because it looks like a dog house and she was desperate to go inside. ¬†And of course, we had to cool down with some Dippin’ Dots!

Ellie took my picture outside of the Ape House:

By the end of the day, there was a lot of time spent on the trolley due to the tired legs (pros and cons to no stroller!).  Our last stop of the day was the gift shop, where she simply could not be swayed from the selection of this quality item for John:

Let me tell you, she was PUMPED to give it to him. ¬†I gave him a heads up that he would need a good reaction prepared for this one!! ¬†It really is cute, just not something that I’d ever pick out for the football loving, guitar playing guy’s guy that I married. ¬†ūüôā ¬†She was also desperate to give Tessa the exact same¬†squeaky toy as she did last year, but I was able to convince her to pick out a little stuffed penguin. ¬†Oh, to know what goes on in that kids’s head!!!!

Last year, on the way home, Ellie slept peacefully in the backseat and I had quiet time to reflect on our lovely day. ¬†This year, she talked (and talked and talked) the whole way home about everything she saw and what she would tell her daddy about our day. ¬†It was exhausting, but equally as lovely. ¬†I can’t help but wonder how she be next year, as an almost five-year-old when we go again. ¬†I don’t know if two years in a row counts as a tradition, but she¬†is such a fun little girl… I can’t wait to go again!!

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Oops!

So, earlier today I published my post¬†Motivation by complete accident…. ¬†Actually, I think Ellie was the one who pushed the wrong buttons. ¬†In any case, it wasn’t done.

It’s done now. ¬†ūüôā

Life with kids…. it’s never dull.

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Motivation

7:00 AM, Sunday morning

I wait.

Behind that blanket-draped gate, Tessa is babbling away, playing with some toys stolen from her sister.

I’m waiting for her to want to come to the other side.

This could take awhile.

Maybe a week ago, our physical therapist said that we were being a little too easy on Tessa.  She has encouraged us to seize the moments when she is most motivated, like when she wants to get out of bed or up into our arms.  Tessa knows that we will pick her up if she cries enough, so her motivation to develop her standing skills is kind of low.  She is a lightening fast crawler, so there is no strong urge to stand and walk and run.  After all, she can keep up with the other kids by crawling.  Yes, she is really that fast.


Yes, I do believe we will be here for awhile.

The fine line between being a kind parent and an enabler is ever-so-blurry sometimes. ¬†At what point is she just not going to put in the effort? ¬†At what point are we beyond a learning experience and into “well that’s just mean” territory? ¬†And when do we just let it go in the name of our sanity?

And when we let it go, are we failing?

Special needs parenting is parenting on steroids. ¬†These issues happen with all children, but the degree… the degree is different.

Motivation: the missing puzzle piece to solving my own impatience. ¬†It’s a tricky one to find.

Especially when it is so hard to say no to this little face:

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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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