Yo soy La Lay

adventures in family, faith, and Down syndrome

Nine Nine Bust a Rhyme

I am, in no way, shape, or form, a poet.  Truth be told, I don’t really even like poetry.  Shel Silverstein is great, but otherwise, poems are really above my level of brain power.

However.

This morning I woke up on my ninth wedding anniversary and all I kept thinking was “Nine Nine Bust a Rhyme,” which is part of a game we used to play in college.  It was one of those earworm phrases that I could not get out.  So today I submit to you a poem, in honor of my hubs, along with my apologizes for bad rhymes and other poetic offenses.

Nine years ago today

In a church that’s not too far

We said our vows

And friends said Wow!

(They loved the open bar)

 

The wedding was so great

Our trip to Mexico too

But even better

Than that day

Is my marriage now to you

(aww)

 

We were so very young that day

Had barely lived we thought

And here we are

Three kids two cars

And all the clothes that we have bought

 

Our children are so crazy

They make us laugh all day

But also though

Our hair of gold

Is turning now to gray

 

Most Fridays we eat pizza

Watch Shark Tank on the couch

Sometimes there’s wine

Red’s yours, white’s mine

And at Scrabble, you’re no slouch

 

You let me call you Jefe

Even though I am the boss

Though honestly

It seems to me

You get your point across

(when making choices)

(that is a terribly written verse)

(sorry)

 

I am so bad at poetry

I hope you can forgive

And when I fall asleep

At eight

Whatever dude, you’ll live.

 

I really need to end this poem

I can’t find a way to stop

But since you’ve brought

The Crazies home

They need their lollipops

 

(Dear God, this is the worst poem ever)

 

Ok that’s it, I’ve gone too far

I just want to share my love

You are the best

Man that I know

God sent you from above.

 

The end.

(Look as us.  We were BABIES!)

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Transition Time

I will set my alarm for 4:26 AM for the last time tonight. Wake-ups in my new job will be earlier than many, but not middle-of-the-wee-hours early. It feels weird.

It has been a slow fade, this goodbye. I knew in February that I would be moving to a new position in the next school year. It seems like the last two months or so have been a reminder of work that I will leave unfinished. Projects started and handed over, next steps left to someone besides me.

It’s quite sad, really.

But still.

I sat out on our patio this morning and watched the girls play on their new swing set. I listened as Ellie and Tessa chattered away, playing with their figurines together. I heard Tessa string together reasonable statements in their imaginary play, and smiled as Ellie slipped into Spanish for a brief moment, then back to English again.

I know why we did this. I have an inkling as to why God is pushing me in this direction, why He planted us here and now. My calling has been here, in this town, for as many years as I could have had a calling. It was just a matter of when and how I would land in this space. It doesn’t ease the trepidation, the heartache, the melancholy panic of transitioning to the unknown, but it reminds me that there is a place where I am needed.

I am grateful for that.

I am certain that I will not miss 4:26 AM, nor the afternoon traffic. The people, though, they are a different story. There is not much that compares to the people. 10 years of my Cougars… it’s difficult to say goodbye. It’s the right time, and a hard time all the same.

On to the next adventure….

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Running (Wo)man

About a month ago, Tessa escaped a very secure deck and was found meandering in the street by a particularly hazardous neighborhood intersection.

The little booger saw a moment of opportunity (a gate that was not fully latched by another child) and, quite literally, ran with it.

I can’t understand where the (fill in expletive) she thinks that she is going. I mean really truly, ????????? Running is not a new behavior for Tessa. I mean, I suppose that in the grand scheme of life, she’s only been walking for about 18 months, but even before she was running, she was a speed crawler. I remember bringing her to Family Friday with our local group, and chasing after her as she tore off on all fours toward any open space that she wasn’t supposed to be. And in her walker, well, we’ll never forget her little foray into the men’s washroom at the local mall.

(Dear Lord, thank you again for the non-creepy man who swiftly lead her back out to safety.)

For our recent Spring Break trip, we purchased a (amazing and super cheap) double stroller on Amazon, as a way to keep her corralled when needed. I have been anti-double stroller for a long time, because in my world if you can walk, you walk. However, with Lauren being at the age she is, we thought this particular stroller was a need for the trip. In any case, here is how the trip went:

Crowded and chaotic location: Out of the stroller, Tessa runs. In the stroller, buckled in, Tessa puts her feet on the ground, stands up, and tries to run, pulling the stroller and Lauren along with her.

Wide-freaking-open field with full permission to frolic at will: Tessa stops, and sometimes flops, then begs to be carried back to the car.

Our current strategy for managing this behavior is telling her to “stay close,” which works approximately 38% of the time.

I just want to figure out where she is going. It is probably a futile effort, but I feel like if I understood the antecedent of the behavior (yes, I’ve got some new lingo from all my reading on this 🙄), I might be able to stop it from happening.

There’s no freaking rhyme or reason!!!!!!!

In the meantime, I’m just investing lots of money in locks, door alarms, and maybe some new running shoes. For me. She doesn’t need any more motivation to get going.

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Family Care

Self-care – so important

Equally as important: Family care

If you remember back in January, my resolution for the year was to write once a week. In the blogging world, it was almost three months before I wrote again. I have taken to writing a quick, one-to-two sentence reflection on our day each night before bed (counts as writing?), but devoting the time and energy to words on the page has been a monumental task in recent months. And for once, it isn’t about self-care. It’s about family.

Self-care has become a ritual for me. I know when I need a break. And I know what helps me regroup, and thankfully, I have a support system to turn to when I am in need. My family is no different – sometimes, we just need to reconnect. Routines and busyness and homework and screens and commitments and budgets and errands and all of the things keep us from each other. This year, what I found in the this long and snowy winter, was that my family was in need of some refocusing. In late January, when emotions were running high and cabin fever was at its peak, I began hatching a plan in my head to get us out of the funk: a little Spring Break road trip to relearn to love and appreciate each other.

It’s funny, because I know that vacations can also bring out the worst in our families; the lack of routine, the rushing around to fit everything in… it can be unpleasant. So when we finally chose a destination (Kansas City), my mission became getting ready for the trip, but also holding myself back from overly preparing.

For me, that meant doing just two things: booking a hotel, and packing our suitcases. We had no prearranged plans. We had no tickets purchased or hopes for what we would do or see. People laughed when we said we were headed to Kansas City. “Why? Do you have family there?” I was often asked. I had no answer – no, no family, but I googled it once and they have a zoo, so worst case scenario, we would just end up there! Time for an adventure.

Friends, it was perfect.

Now don’t get me wrong here, it was not *actually* perfect. Tessa’s running was a real pain in the ass. Lauren did not appreciate the long hours in the car. There were no naps. And we definitely went over budget. But we had a blast. We followed our intuition and did what felt right in the moment. With no expectations and no time constraints, no one cared about sitting in the car for 15 minutes deciding on the next stop. There was no worry about inconveniencing anyone with our need to eat dinner at 4:30. And on our last night, as my three girls giggled themselves to sleep in a way that I haven’t heard…. well, frankly, ever, I knew we had gotten this right.

Kansas City, you were good to us. Thanks for the giggles.

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WDSD18

Tessa rocks.

Because of big, happy grins.

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Because of a sweet little nose.

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Because she is stubborn.

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Because she is obsessed with doughnuts.

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Because she is a worthy human.

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Because she is STRONG.

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Because we are better with her.

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Because she has a place in your class, in your school, in your community.

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Because the world needs love like hers.

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Because laughter.

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Because OH MY GOSH THIS SWEET VOICE!

Because of all the little pieces of her that rock.

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Happy World Down Syndrome Day.  We are so thankful that she is ours.

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2018

We hibernated through most of 2017. There was a lot of general illness in our family with two kiddos starting new schools with new germs. I was pregnant, we were tired, my gallbladder died… you know, typical life stuff.

(Insert eye roll here.)

In any case, here we are in 2018. Our cast of characters has expanded. We are ready with goals. Let’s go!

John (age at this writing, almost 33): No longer coaching (Praise The Lord!). Still Fantasy Football Commish Extraordinaire. Pretty much Dad of the Year for getting the girls ready and out the door on his own every day. Seriously questioning his decision not to purchase a second car that can fit three car seats so that we can share pick-up duty after work.

Ellie (age appears to be 16.5, but is actually only 6.5): First grade, dual language, Moana-obsessed, definitely type A. Very much like a tiny adult, but with impulse control issues and child-like enthusiasm for all things pink, princess, and McDonalds. Will only wear dresses that are “twirly.”

Tessa (4): A little chatterbox and television fanatic. Quite persistent with all of her demands. Loves old people and anyone who might be willing to give her a cookie.

Lauren (age is somewhere around 6.5 months maybe?): The best baby ever. No, seriously. That’s it. She rocks.

Me (age 32): Still Type A, but really trying to convince myself that I have fallen into the A- category by now. Trying to learn calligraphy, but failing. New Instant Pot user (the world has gone mad for pressure cooking!). Cutting back on wine and all the good foods in life, so please forgive any snarkiness.

I only have two goals for this year: to write at least once a week, and to vacuum at least once a week. I can tell you that last year, I wrote way more than I vacuumed, and you all know how often I actually wrote sooo….. yeah. There’s some work to do there.

Welcome, 2018! We’re ready for you!

Ellie’s first White Elephant win….

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Peace, not perfection

I never tire of the holidays.

I have no max input of twinkly lights.

Buying presents does not exhaust me.  I could wrap for days and days.

I love the endless onslaught of Christmas cookies.

I have no fear of the rush to move from house to house, visiting with family and friends, enjoying coziness and cheer and gingerbread house making and ALL OF THE HOLIDAY THINGS.

(I have probably grown tired of the Trolls Holiday Special but that is beside the point.  Those creatures are annoying.)

I am sure that much of my love of this season stems from the fact that I have two love languages: gifts and quality time.  The American Christmas Season was made for people like me.  I mean seriously – all we do from Thanksgiving through New Years Day is what I love – buy things and love on each other through endless holiday gatherings.

Sometimes where I falter is in reminding myself that the American Christmas Season was not made for all of the people I love.

Eek.

For example, about a week ago, my parents took me and the rest of the ladies in the family to an afternoon performance of The Nutcracker.  I imagined a magical afternoon with my girls, their faces lit up with unbridled excitement at the costumes and the music and the dancing.  As the performance drew nearer though, I began to have some trepidation of how Tessa would respond to the theater environment.  In general she has struggled in concerts, performances, and other events where there is clapping and lots of sensory input.  In the name of including her, we forged ahead with the day, and I was hell-bent on making this a great experience.

Until it wasn’t.

Before the curtain even went up, it was apparent that she was going to sob her way through the performance (I suspect in fear of the moment that applause would break out).  It didn’t matter if I covered her ears or found some other way to block out the noise, she was not going to have it and my magical day with the girls suddenly felt heavy and sad.

I’ll be totally honest – when I ran out of the auditorium and into the bathroom with her, I cried in anger for about 15 seconds because this beautiful experience was so hard for her.  It felt really unfair.

And then, as I sat with her in the lobby and waited for John to take her home so that I could watch the show with Ellie, I thought through all of the hard things that people deal with in the holidays.  I gave myself an internal stern talking-to and reminded myself to calm the **** down.  Because seriously, this is a molehill compared to the hurt that people struggle through during what should be a sweet and festive time.

My struggle with perfection has come to head this season as I have seen my eldest start to navigate the very real irritation that I also feel when things do not go as planned.  She is as I am.  And to help her function in our world, I have to consciously choose peace in the imperfect, not in perfection.

It is not easy.  I have wanted desperately to rearrange ornaments, or people’s choices in meal times, or my child’s psychological brain function…. it’s not realistic.

Peace is not perfection.

Peace is not perfection.

There is still so much to be learned. ❤

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Four

Four beautiful years of joy.

There is no other way to describe them really, not in a word. Certainly we experience fear, frustration, sadness, hope, exhaustion… but in every moment, also a great joy in her presence.

I always get emotional at this time of the year. It’s not the stress of the holidays, nor the deadlines that loom when wrapping up a semester grading period. My breath catches in my chest each and every time I think of her birth – of the moment when I finally held her in my arms, listening to my doctor calm our rattled brains… My mind travels to the mundane… helping our visitors to the hospital scrub into the NICU before seeing Tessa, eating our cake on the night before discharge, child-free, trying to hitch a ride to the hospital to see her, not able to drive quite yet after having an epidural.

I think about the emotions of having two children and not being fully present for either one. The crying quietly in the shower, desperate to be able to be all of the mom that Ellie needed through the holidays, and all of the mom that Tessa needed to heal enough to come home. The fear that we would not be enough for her, or for either of them really. And also being completely enamored with each little finger and toe of this little stranger… that feeling, above all else, I feel like it was yesterday this time of the year.

I have felt simultaneously like the years are flying past at breakneck speed, while also creeping along in blessed slow motion. With Tessa, there is time to savor, to drink in every phase for all of its good and all of its challenges. It feels peaceful.

It also feels wild.

She is high energy – walks fast talks fast dances and moves and runs fast. She can’t do some of the things that four-year-olds can do. But she can do some things that most people will never be able to do in their whole lives.

I don’t know precisely why Tessa was sent to us, but I know that we are more complete with her. Her presence has been a gift that our family needed… that I needed. In her life, there is purpose, there is hope, there is love – and joyfully, we celebrate four years with our sweet little girl.

Happy birthday, Wild Lady. We love you so much!

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DSAM17 – Day 31 – Just another kid

31 days of surprises and the top of my list?  She is just one of the kids.


Tonight we went trick-or-treating with the cousins.  House to house through the neighborhood they went, collecting treats galore.  At each house, they all said “Trick or Treat” (or I want treat! or Do these have peanuts?)  and then “thank you.”  After a marathon of stops, they ate pizza on the living room floor and watched Black Day.

And Tessa was just one of the kids.

It’s like that around here.  Sure, there are some differences.  For example, thanks to low muscle tone, her “I’m done trick-or-treating” looks like this:


And, she may or may not have been given some extra candy on occasion due to her extra chromie. (Who can resist a child who so innocently asks for “more please?”)

(One neighbor told her to pick two and she sweetly looked up and said “how ’bout… four??”  They said ok, but while I cheered inside because yay speech!!, made her stick to the two.)


The reality is that out and about, we saw friends from her swim classes and school.  All the kids that said hello treated her like just one of the crowd.  So while the fear of sticking out like a sore thumb had filled me for years, tonight she was just another little girl in a Frozen costume.  

Will every moment always be like this?  This shining example of community inclusion?  Of course not.  There are many battles to come.  But now, on this Halloween Night, I am savoring the joy of a little girl, more alike than different, who brings so much light to this crazy world.

Thanks for spending this month with us. ❤️

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DSAM17 – Day 30 – All the voices do not speak for us

There are a lot of voices in the Down syndrome community.  They are rich and varied and they do not all speak for me.  They do not speak for my family, or for Tessa.

(I think it’s important to interject here that Tessa’s life is hers, as is her voice.  It is not my intention to speak for her throughout her whole life.  However she manages it, she gets her own voice.)

I have found the variance in these voices surprising.  I had a single story of what I thought Down syndrome looked like in a family’s life.  While some have been empowering in their words, well, I did not know how difficult some of the other voices would be to hear.

Recently, I sat in a talk given by a very loud voice “for” individuals with Down syndrome.  Toward the end of her speech, she said this:

“I know we talked about moms from every category, and I know they exist because unfortunately, I see every category at (the organization she runs).  I’ve seen it all, every day, um, I see kids succeeding, and then I also see the kids that are failing.  And I know why they’re failing.  And it’s really hard to not be able to step in and help change that and sometimes they choose a lifestyle and there’s nothing I can do about it.”

^

I cannot tell you how much my heart ached when I heard those words.

If you are a mom of a child with Down syndrome… you need to hear this:  Your child is not failing.

It doesn’t matter if he has no words or uses assistive technology to speak.  It does not matter if she cannot walk 10,000 steps a day.  It doesn’t matter if you are not ready to call someone out for using the word “retarded.”  It doesn’t matter if he doesn’t write his own name on his paper.  It doesn’t matter if she wears clothes from Justice until she is 65 years old.  Your. Child. Is. Not. Failing.

Please hear those words and believe me.  You are doing a good job, and so is your child.

If you have not heard the TED Talk about The Single Story by Chimamanda Ngozi Adiche, it is linked above.  It is a really great talk, and very much worth 20 minutes of your time.

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