Yo soy La Lay

adventures in family, faith, and Down syndrome

Home.

Everything we do is an adventure.

The adventure of our new forever home is short and wild and sort of overwhelming, but in a good way. It’s all good.

About a week ago, we decided to start looking for a home casually. This is the last time I am moving (I swear) and we want to do this right.  We feel a strong need to find the right place.  I have been scouring Zillow for months, waiting and waiting for the right home to come up.

It’s been rough.  Our list is short, but crucial.  Must have two full baths and a main-floor potty.  Must have a basement for severe weather.  Must have a yard that can be fenced. No well water.

Do you know how hard it is to find houses with two full baths in our area??

On a whim Saturday, we visited an open house.  We wanted to get a feel for what 1,400 square feet might feel like.  It sounded small, smaller than our last town home, but the layout in our last home was as open as open can be.  I didn’t want to go down that road again either.

After 5 minutes in the house, we both knew it was “the one.”  That night, we joked about putting in an offer.  We both sort of agreed that it was crazy because we hadn’t seen anything else and who does that??

Well, we do.

By Monday night, especially when we heard another offer was coming in, I was pretty much desperate to make this home ours.  Quite hesitantly (because “people just don’t do this, Mag!”), John called in a offer.  He was not happy with me, but I’m a girl who knows what I like.

We got into a double-bidding situation.  After a meeting with our realtor, we had to put in our highest and best offer for the home.  As I grew more and more anxious, I decided to write a letter to the sellers to ask them (or beg them, really) to choose us.

(This has been edited for location privacy)

Dear Sellers,

We are writing to ask you to give us the privilege of purchasing your home. Our family is very early in our search. In fact, yours is the first and only home that we have visited. However, last Saturday, when we came to your Open House, we knew right away that your home is the perfect fit for our family. It is exactly what we need and want for our forever home.

We have been prayerfully waiting for the right home to be available in this neighborhood. As a child, I attended ______  and when our youngest daughter was born with special needs two years ago, we knew that we would be moving back from _______ so that she could attend _____ as well.  The school is well-equipped for her needs. We sold our previous house and have been living with my parents while we wait for the right place and the right timing.

Our four-year-old is very excited about the backyard and that we may be able to plant some vegetables in the summer. We envision cook-outs and family gatherings on the brick patio. The location is perfect – we frequently visit _______ and their proximity to the home cannot be topped.  We are in love with the kitchen space. I am not always excited about doing dishes, but when I think about doing them by that window in the kitchen while the kids play outside, it’s much more bearable. 🙂 My mother-in-law visits regularly to help us care for the girls and I know that she will appreciate her own bedroom space on the main level, rather than sleeping on an air mattress in the girls’ room. My husband has been mapping out plans for the basement “man cave” and I would love to use the other first-floor bedroom as a sensory play room for our youngest daughter.

We are ready to settle into our forever home. We can tell by the care that has been put into your home that you have kept it well and that it has been loved by your family.  We love it too, and would be proud to make it our own.

Many thanks for your consideration,

John, Maggie, Ellie, and Tessa

Long story short, after a nerve-wracking two-and-a-half hour wait, we received word that we had won the bidding war.  Even though our bid was slightly under that of the other party, our letter convinced the owners that we were the right family.  We are over the moon with excitement.  It has been a whirlwind week, but finally, finally, we are going home.

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State of Our Union, February 2016.

It’s time for a good, old-fashioned State of Our Union update.

My lack of writing hasn’t been for lack of topic, or even lack of energy.  Quite frankly, I have lots of ideas rolling around in my head, ready to shake out on the computer page.  What I haven’t found is an environment in which I can feel settled in and focused on the words.  This is just my general state right now – a lot of things in a lot of places (including my own brain) and a routine that is somehow not routine at all.

It’s weird.

We sold our town home in December and are looking forward to purchasing a new home in the Spring, when it is a little greener and a lot warmer.  Still in the midst of Crabuary, John and I are both busy with the odd, mid-year craziness.  For me, I’m in the phase of my year that is still this year, but kind of next year all at the same time.  We talk a lot about events in the here and now, like parent conferences and grades and institute days, but also about next year.  Next year’s schedule, next year’s group of students, next year’s curriculum.

See?  No settled, no focus.  I’m like one of those frustrating novels that keeps flipping back and forth between time frames.

Those make me nuts.

Ellie’s big “news” is that she is officially a reader.  This is something that she is super excited about.  She loves books, always has, and so now that she can start to go through them on her own, she’s thrilled.  Last night, I came home with some kind of cold virus.  She plopped me on the couch, covered me with a blanket, and sat down with Are You My Mother? .  She read me the whole thing, cover to cover.  It took her an exceptionally long time, but she stuck to it.  So cool!!

We’re getting ready to enroll her in Kindergarten next year.  Like most parents, I’m not sure how we got to this point already.  The district that we are in right now offers a Dual Language Spanish program at one of the schools and we are fairly certain that this is the program that we will send Ellie to.  She would start with 80% of her day in Spanish, gradually moving toward a 50/50 English/Spanish split.  We toured the school recently and I feel pretty confident that it is the right fit for her.  We were also very pleasantly surprised that the principal made a point to tell us that they are “fully inclusive,” so sending Tessa in a few years is not off the table.

Please let that sink in for a few moments.  Tessa.  Learning SPANISH.

There is no “no.”  There is only “how can we make this work?”

Speaking of Little Miss… we have an annual review coming up on Monday.  She is on a roll these days!  No, no walking yet.  No, I’m still not stressed about it.  When she gets too heavy to carry, we’ll have another conversation.  Right now, her words and her play skills are totally blossoming.  We are still using sign quite a bit, but she is picking up on words and phrases left and right.  The very latest is that she says “Cheese!” when you hold the iPhone camera up to her face.  It kills me.  SO cute.

Her interactive play has also grown extensively.  Simple tasks like rolling a ball back and forth or playing peek-a-boo took a little extra time, but we are SO there.  She’s gotten quite good at distraction.  When I come home from work, my mom always has a good story about how Tessa has used her charm to get out of therapy or even worse, to get out of trouble!  In public places, she is a total ham with other adults.  This is something she has done for a little while now, but boy, oh boy does she love to wave and blow kisses at all the passersby.

Suffice to say, we’re rolling along now.  Good things are on the horizon, but good things are happening now, too.  It may feel unsettled, yes, but good.

I haven’t had the opportunity to sync my latest pictures recently.  We’re over on Instagram now, participating in the #365ofDisability.  If you want to join us, we are @yosoylalay .  Lots of cuteness going on over there.  🙂

Happy almost-Valentine’s Day!

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Two

Two is such a sweet little word.  Two.  Just say it out loud.  Come on, do it.  Seriously.

It makes me smile, and so does this beautiful face:

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And so, now she is two and we are smiling.

This isn’t an entry about a path to acceptance or how far we have come.  It’s not meant to tell you all the wonderful things that she has accomplished this year.  I don’t feel like celebrating all the hard work and the progress, I just want to celebrate her and who she is and what she means to our family.

At two, she’s fun and feisty.  She loves to say hello to strangers in the store.  She throws her arms out when she wants to be held and is crazy persistent with her demands.

Her favorite food is vanilla Oreos, which she daintily holds between thumb and index finger and slowly nibbles away at each night after dinner.  One cookie is never enough.

She doesn’t much feel like walking.  Crawling suits her well enough for now.  She has a great stink-eye when she’s not into whatever you are requesting that she do.  The therapists get it often.  So do I.

Her enthusiastic “Hiiieeeeeeeee” when I walk in the door makes me grin every time.

She’s upset by laughter still, but calmed by big hugs.  She loves to read books and make animal sounds.  She gets angry at bedtime.  Bright and early in the morning, she pops up and chatters Ellie’s ear off until she gets a response.

She cracks herself up.

She sings.  It is the sweetest little sound.

She’s been worth every stretch mark and extra pound that I haven’t lost.  Every chaotic mealtime with two small children instead of just one.  Every frantic dash to clean up before therapy.  She’s worth all of the everything.

And really, all of the everything is nothing compared to our love for her and our gratefulness to be raising her.

Two has come quickly.  The other years, I am sure, will be no different.  I am just so thankful to have her to say hi! when I walk in the door, to give hugs in the morning, to steal hearts and change minds and to teach her sister (and maybe some others) a little something about kindness and sharing and love.

Happy birthday, Tessa!

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In appreciation of just showing up

In my own process of navigating our Down syndrome diagnosis, I have kind of, for better or worse, made it all about me.

From the moment I learned that there were people who cried when they learned the news about Tessa, I essentially said to hell with their feelings, they don’t get to feel that way, she’s my kid.  I’m content and they had better damn well be content too.

And away we went.

I could go on for a long time about whether this was the right choice or not.  The reality is that we all get to have feelings.  And, perhaps more importantly, our feelings are our reality.  Accepting, living with, even enjoying a world with Down syndrome is challenging for some people.  It may still be a challenge for some of my closest family and friends.

This is a note of appreciation, from me to all of you.  Thank you.  Regardless of your feelings or your place in the acceptance process, you show up.  Every time.

I remember that for a couple of months, it was very jolting for me to interact with older teens and adults with Down syndrome.  I’m sure there are a lot of reasons for this… but mostly, I was afraid of acting the wrong way, of trying to be normal, but maybe coming across as not normal… Afraid of saying the wrong thing or looking the wrong way or God knows what else.

I am sure that this is a challenge that my family sometimes faces.  But it doesn’t stop them from showing up.

I had this moment of clarity and deep gratitude last Saturday morning… One Friday per month, our local group puts on a Family Friday event where kids and their siblings get to run free in a daycare facility while the parents chat.  It’s the highlight of our month. 😀  This month, John’s sister and her family were in town and we asked them to join us for Family Friday.  Without hesitation, brand new baby in tow, they were in.

There are a million great excuses that they could have used to duck out.  Instead, they ventured into our community and got a little more cozy with Down syndrome.

I cannot tell you how much it means to us when friends and family just jump on board.

There are so many other examples of this.  Team Tessa and our amazing friends who raise money for our group.  The friends and family who come and hang out in our UPS for DownS tent on race day.  The willingness to be a part of things that help us connect to a community… The acceptance of Tessa as just plain Tessa, with or without an extra chromosome.

There is no greater gift that can be given to our family than to just show up.  Thank you all for doing that, time and time again.

  

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Dad Sabotage

It is an annual tradition of mine to kidnap John around Father’s Day and take him (and the girls) out to the Quad Cities, where we met and attended college.  He never really knows when it is coming and this year, we got him good.

We have quite a few trips coming up in September and October and, given that is it now practically August and we hadn’t gone yet, he thought it was going to be an off year.  This is why, when I told him that it was time to go shampoo the carpets at our townhouse and asked him to please let me drive so that he could call his mom, he didn’t bat an eye.  Then, I asked him to open the glove box for some gum and he found this:

He knew.  Inside the card, a terrible little poem that I wrote on a whim, telling him that we were off on a little journey:

It’s horribly written, I know.  You can only write so well in the grocery store parking lot with a four-year-old asking 47 questions a minute in the back seat.

In any case, he was over the moon excited.  And thus, our 36-hour whirlwind trip began.

I love this.

We ate dinner in one of our favorite QCA restaurants and went swimming in the hotel pool.  Tessa loved it, Ellie was totally freaked out by the depth of the water.

After swimming, Whitey’s Ice Cream, another must-have when we visit what feels like our second home…

Where the heck is my ice cream, Dad??

 After ice cream, it was time to get the children in bed, so back to the hotel we went.  It’s always a curious thing, finding a way to stay awake and chat as adults while sharing a hotel room with the children.  This year, John tried putting on episodes of Everybody Loves Raymond, but after a couple of references to testicles and a vampire commercial, we thought maybe we should try the quiet reading time method.  After about five minutes, we got a lecture from Ellie.

“Guys, no lights, no TV.  It’s time for bed.  Come on, let’s go, lights out.”

Alright then.

In the morning, we visited Jimmy’s Pancake House for the most delicious pancakes that we have ever eaten.  We come here every time we visit the QCA and are never disappointed.  This was the first time that we had brought the girls with us.  Tessa was hammin’ it up with everyone around her.  The waitresses all came over to say hello and at the end of the meal, our waitress asked if she could take her to meet some of the other staff.  It’s a small place and we have had this waitress a few times, so since Tessa was ok with it, we let her go.  She was high-fivin’ everyone she met!  Hilarious.  I asked Ellie (who was just a little bummed that she didn’t get paraded around) if she thought Tessa was being a ham and she said “No, she’s not a ham.  She’s a lover.  She just loves everyone!!”

Also, I’m not sure if you knew this or not, but if your kids are starving, jelly packets make a great appetizer.  Just FYI.

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No visit to the Quad Cities is complete without a visit to the Family Museum… as long as the kids are with us, that is.  🙂  It’s one of the best children’s museums that we have visited, mostly because it’s small enough to let the kids do their thing and they can actually interact with all of the exhibits without being overrun by 50,000 people.

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They have added a really neat area that is designed for crawlers and new walkers.  Tessa loved it and got a lot of PT practice that I’m sure her therapists would appreciate.  Personally, I appreciated the time to just sit and watch her safely crawl around and explore.

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The real reason that we love the Quad Cities is our emotional tie to Augustana.  It’s a small school – and graduates of Augie are sickeningly devoted to our alma mater.  We can’t help it, it’s just a lovely place to be.

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We also visited the John Deere Tractor Museum…

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And then Ellie let us know that it was time to go home.

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See you next time, Quad Cities.  We can’t wait to come back!

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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. 🙂

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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!  🙂  
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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.  🙂  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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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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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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Mom Kryptonite

I will just put this out there: I find it completely impossible to be an effective parent while wearing skinny jeans.

I don’t know, it might be just me, but hey, God has blessed me with a curvy figure, so those skinny little leg holes don’t have quite enough room to fit my calves (and let’s not even talk about the lack of support for my hips and leftover baby belly).  Sometimes, I get a little brave and throw them on when I’m hanging out with my kids.  It always seems to be on a day when I’m going somewhere in public and inevitably, as soon as I’m dressed, Ellie’s hands suddenly seem to be coated with a thin layer of butter and everything she touches falls to the ground.

Is it really possible to bend over and pick anything up gracefully while wearing skinny jeans??

I share this because when I put on the skinny jeans, it’s like kryptonite for my mom-ness (surely not a word, but yeah.) and while sometimes that’s ok, I feel like being a mom is so ingrained in me right now that losing any of the Mom Super Powers gets me totally off-kilter.

Case in point:  Last weekend, John and I hit the city with some childless friends of ours.  The girls were with my mom and dad over night, we were staying downtown… I decided to rock the skinny jeans.  And high heels.

Please understand that, for my entire life, I’ve been an early-to-bed, early-to-rise kind of girl.  This extends far beyond the years that I have had babies, but at least before the children, 10 pm didn’t seem like the middle of the night.  On this particular evening, we had dinner reservations at 8:00 (gulp.) and then tickets to a comedy show at 10:30 (people actually go out of their homes that late at night??).  “Have fun!” they said. “You need to get out and live it up!”  they said.

In my fresh, hip, and completely impractical outfit, hot dang, I was invincible.  Don’t get me wrong, I had a blast.  We had great conversation, I got to drink a glass of wine uninterrupted (but only one because Good Lord, I can buy two bottles at Meijer for that price) and have adult conversations… It was fabulous.  So fabulous that we decided to keep the evening going until the wee hours of the morning.  Irresponsible, but fabulous.

One week later, I am still tired.

And those jeans?  They have been banished to the back of my closet, hidden under a pile of more reasonable boot-cuts, until my next temporary lapse in sanity.

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