Yo soy La Lay

adventures in family, faith, and Down syndrome

Ready, set, go… Year 3

31 days of blogging for Down syndrome awareness month…  on my iPhone.

Yikes.

We don’t have a working computer these days, but I’m determined y’all. Starting tomorrow, we’re covering 31 surprises about life with Down syndrome.  Please bear with me on the formatting.. and the typos.. and all of the joys that come from doing this without an actual keyboard.

If you have missed us, my apologies.  I have missed you too!  I have been so itchy to write, and really can’t wait to bust out of my technology-failure-induced-rut.  There’s so much to say!!

Here we go!

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Three

The holidays always lend themselves well to being nostalgic. It’s almost required, isn’t it?  And when we throw Sweet Girl’s birthday into the mix, sheesh, pull out the Kleenex!

I keep sitting down to share her milestones this year, to tell you how far she has come, and to celebrate the joy of having her big personality in our house.  The problem is, all I keep focusing on in my own mind is that there is no picture of Tessa and I together on the day she way born.


Funny what the mind holds on to.

There is no sadness in her existence.  There is no wistful dreaming of taking away her struggles.  There is only a smiley, fun, curious little three-year-old with an independent streak a mile wide.


She loves to wander from room to room, searching for items that are supposed to be out of reach to pull down and steal for her toy room.  Current favorites are my pot lids and mixing bowls, along with any of Ellie’s coloring utensils.


She wants to do all of the things that her cousins do, and insists on being included in the fun.  She is always singing.  She is always talking.  She has excellent manners, though the phrase “no, thank you” is more of a curse than a blessing these days!


She loves pretzels and broccoli and frosted animal crackers.  She grabs books from the shelf and tells you to sit so you can read them to her.  She gravitates toward people who are hurting and gives great big, melty hugs, drumming her tiny little fingers on your back to make sure you know that all is well.

In three weeks, she’ll take that little preschool classroom by storm.  Tessa’s huddle will get bigger and bigger.  And as freaked out as I am to send her into the giant world, I can’t wait to go on this adventure in the passenger seat.


Happiest of birthdays, Tessa Lynn!  How thankful we are that God sent you to us. ❤️

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Dear Unsuspecting Mall Walkers

Dear Unsuspecting Mall Walkers,

I’m sure you enjoy your mall walks on Saturday mornings.  You go early enough in the day that you can avoid the crowds of strollers, the throngs of people out to see the Craft Fair in the center of the mall or the raucous teenagers causing disturbances as they navigate their awkward relationships and newfound freedom to explore.

We headed to the mall early this morning, too.  The early rain foiled our plans to head out to a local pumpkin farm but by 9:00, the children just needed to be out of the house.  Hoping to avoid spending money to do anything, we made the decision to get Tessa some practice in her walker at the local mall.

Looking back, this was a terrible decision.

I should have known this when one of the following things happened before we left:

  1. Ellie started complaining of a headache, which always means that she is about to get some sort of illness.
  2. Tessa unrolled an entire roll of toilet paper and threw it into the (running) shower.
  3. I put on skinny jeans.

Normally, we keep a tall bar on the back of the walker that allows us to grab hold of our speed demon when she takes off.  Today, we did not have it.

Today, we should have had it.

So to all of you unsuspecting mall walkers, who got to mix up your workout routine to dodge and weave while she careened around corners and at times, beelined right toward to you as fast as she could so that she wouldn’t miss a chance to say hello… well, I’m sorry.

And to you, shop owners, who were busy setting up for your day when a loud almost-three-year-old showed up in your store and shouted “HI!” to all your unsuspecting customers (actually, #sorrynotsorry for this one).

But especially to you, Man Who She Tried To Follow into the Bathroom.

Yes, that happened.

We stayed for precisely 22 minutes, 14 of which were spent trying to convince Tessa to walk out of the building, ultimately throwing her angry little body over my shoulder while John carried the giant walker and the wilting five-year-old back to the car.  Once we had exited, we paused to reshuffle children and equipment and suddenly there was vomit on my shoes from the now completely wilted Ellie and John and I just laughed because what the hell were we thinking in the first place??

So, sorry.  I can’t promise we won’t be back anytime soon because community integration and stuff, but hey, at least we’ll put the bar on the back of the walker and try to control the chaos just a little bit.

Most sincerely,

A Tired Mom of Two Wild Children.

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Dear Kellie

Dear Kellie,

(No, not you, Kelly.  That’s another post for another day. 🙂 )

In an odd coincidence, perhaps foreshadowing what was to come, on the day that my OB called to tell me that my HCG levels were rising nicely and that I could expect this pregnancy to continue, I spent the day with you.  Well before the words “Down syndrome” or “inclusion” or “least restrictive environment” were a part of my every day thoughts, before my life was catapulted in an entirely different direction, my task was to shadow you, an elementary school principal, so that I could learn about your position.

I had chosen your school because you had been highly recommended to me (one of the best, they told me) and because at the time, I knew that someday, Ellie and this little one growing in my belly, would walk the halls of your building as students.

I was nervous, having not stepped foot in an elementary building since I was a child myself.  But you were kind and helpful, welcoming me into your day and talking me through your usual schedule.

On the docket for our day was a family visit.  This new family had just moved into the district, you explained, and while they lived within the boundaries of this building, one of the children had a disability.  You explained to me that while the other two siblings would be able to attend your school, the littlest girl would need to be placed in another building, where children with her type of disability were housed, so that her needs could be met.  You and I would travel to the other building, meet with the parents and the other principal, tour that school, and our goal was to help the parent understand why his daughter could not attend her home school.  Her parents were pushing for her to stay at the home school, and in your words, that isn’t how things are done in your district.

I was floored.

Before I ever had Tessa, before I was as well-versed in the law as I am now, before this fight for inclusion had come the forefront of my mind, I knew this was wrong. I knew it.  I didn’t understand how this child could be separated, segregated, away from her family, away from her neighborhood.  At the time, I didn’t know enough to ask the right questions; I didn’t know to push you to think about this in a different way.  But I knew it was wrong.  And to be honest, I think you did, too.

It is because of this very day, that promptly after Tessa was born, we made a plan to move before she would go to school. My feelings on that day drive so much of what I do now.  I cannot even imagine how different that day could have been if I were to live it today.  Because today, I have a stronger voice, and I use it.  I wish, for that girl, on that day, I would have said something.  I suppose I can be thankful that God put me in that place, on that day, to prepare me to advocate in the future.  I understand that you have moved on from that building and pray that you are in a district that encourages you to promote education in the least restrictive environment for all students, as is required by law.  I pray that you no longer group students based on a diagnosis, and that you have grown in some small way to understand that segregation is wholly inappropriate for children to reach their potential.

All the best,

Maggie

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Leaving on a jet plane

Texas was never on my short list of “Places I would like to travel,” at least until about 6 months ago.  Too hot, too big, too Red, too many steak houses where they give you a prize for eating a whole cow.

But then the Down Syndrome Diagnosis Network announced that the 2016 conference would be in Dallas.  And I missed the last one and sure as heck wasn’t going to do that again.  So Texas, yay!

(Hopefully they don’t check my voter registration card at the gate… Or they might not let me in!)

I’m going to spend the next 48 hours or so with 120 strangers, sort of.  Actually they are friends.  Stranger friends.  Online stranger friends.

Is the this 21st Century or what??

So I’m sitting an airport, sipping a hot coffee and eating the best muffin I have ever eaten.  I’m so excited.  And I miss my little family.  I’m amazed at the whole world that has opened up through because of a wee little choromosome.  I’m so thankful for this chance to refresh and recharge.

So very thankful.

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Ten… A developing story

This is my tenth year teaching.

I need to let that sink in a little bit.  It overwhelms me.  No, seriously.  I said it out loud today and I didn’t believe myself.  So I counted on my fingers to make sure.

I’m sure.  (Big gulp)

People who have taught longer than me will tell me that time flies, the years go faster, yadda yadda.  I know, ok?  I know.  It’s like telling a pregnant lady that if she thinks she is tired now, just wait until the baby comes.  

Some things are better left unsaid.

In my role as a division head, I only teach one class.  I spent the past two years working in our program for very academically at-risk students.  This year, I get to teach a class of Spanish again.  And so, on top of my minor freak-out about this being my TENTH year, I am also freaking out that holy cow, I have to remember how to teach Spanish.  I feel ready, but… I don’t know, nervous!

The first day of school is my absolute favorite.  I love the rush of the new kiddos, finding lockers, lost little freshmen, sharpening pencils, new outfits, old friends… It makes my heart swell every. time.  A year fresh and full of possibilities – it is the best.  And those nerves…. a thousand little butterflies ready to soar.

This year, I have been reflecting on where I will focus my energy, about how I will continue to develop in my roles in the building, but also in life in general.  It’s so funny, it’s like this new house has brought a sense of settling to life – things are still chaotic and ever-changing, but it feels stable, like I can breathe and think and do.

Part of my nerves, and oddly, part of my settling, is a song lyric that has been stuck in my brain for about two weeks now.  I think about it over and over, and then I pray about it, and wrestle with what it might mean.  I can’t get it out.  And with my tenth year gearing up to go, it just repeats and repeats…

“Every time somebody lives to serve and not be served…”

That’s it.

The message is clear as a bell.  There is no denying that.  How that serving looks in my world gives me much to consider, and certainly reflection on those times when I am living to be served merit reflection as well.  I can easily point to the others around me who I feel are demanding to be served, but this isn’t about them – it’s about me, and about a lyric that, in this tenth year, when life would seem to be settled, somehow is my driving force for change.

Go.

Do.

Try.

Help.

Love.

Live to serve and not be served.

This is a developing story.  More from the field as it becomes available.

To listen to the full song from which this lyric comes, see below:

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Zoo Day, Take 3

Sitting in my new writing space, I’m watching the last of our summer sunshine slip through the treetops.  I went back to work last week, but tomorrow, all of our teachers report.  The girls will go back to their Mimi Daycare.  John will be up and dressed in the morning.  Our routine will begin to settle in.

Our annual traditions have come and gone for the year, but as I wrap up the loose ends of a summer vacation, I realized that I didn’t write down enough of those moments.  After all, I write so that my girls can remember – when I don’t write, they have to rely on my poor photography skills and fuzzy memory to piece together their childhood.

So I write.

Ellie and I had our annual Zoo Day much earlier this summer.  Although, it’s worth noting that the traditional date, which is the day after I finish my school year, flew by without our normal outing.  At the end of the school year, I had a brief bout of food poisoning, and we moved, and I had to hire some positions unexpectedly… and soon it was mid-June with no Zoo trip.  So Ellie stomped into the kitchen, grabbed a permanent marker, and scrawled “ZOO DAY” on the calendar.

How does one argue with permanent marker in almost five-year-old handwriting?

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It’s funny, I don’t know if it is just because she has grown so much over the last year, or if it was timing, or just me, but this trip felt so different for me than in the past.  In year one, she was still in a stroller and pull-ups; year two brought an obsession with zebras and the bathrooms. This year, she wanted two things: Dippin’ Dots and a ride on the trolley.

She loves to get a zoo map and navigates through the zoo like any good tourist would do:

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By far, her favorite animal is still the zebra…

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But she also got a great kick out of the river otters this year.  She even picked out a river otter toy from the gift shop this year.  She lingered longer at each exhibit, too.  Since she can now read, she took great joy in examining the placards in front of each animal.  Things that she was once scared of, no longer made her panic.  I, the proud mother, happily snapped pictures of my brave girl, conquering the dreaded kangaroo pouch, the swamp, and that silly bird house.

We took our annual selfie on the trolley…

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And she made point to stand in every. single. one. of these look-through thingies (do they have a name???):

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I made her wait until the end of the day to get her Dippin’ Dots, even though she complained pretty much every five minutes until she got them.  We sat alongside the big fountain this year.  She enjoyed watching the people go by, and even made a new little friend with the girl sitting by her family eating Dippin’ Dots across the way.

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Our Zoo Days are usually long – with a breakfast and several hours wandering the familiar paths.  This year, she had her fill in about two hours.  After that, she asked to go back home to Daddy and Tessa.  Our stop at the gift shop this year though, was considerably more difficult.  She is a thoughtful little lady, and after much deliberation over which item Daddy would most like to display on his desk at school, she settled on this keeper of a mug that I know John can’t wait to show off to his colleagues:

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(She doesn’t need to know that I had to dig it out of the back of our tupperware cabinet just to take this picture.)

A little older, a little calmer, a lot of sweet memories made with my sweet-ish girl.  Who knows how many more years of zoo days I can talk her in to, so I will continue to soak in every one. 🙂

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Making “Home”

Remember that we bought this house?

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I’ve been really wanting to give you a tour since we got ourselves settled in!  I put it off, hoping to have it “all done”  before I shared pictures, but let’s be honest… is our home ever really going to be all done?  I’m settling for all clean.

(And by all clean, I actually mean picked up enough that the junk can be easily moved to another room while I take a picture of this one.)

(Which is also why this tour will only include our main floor.  You’ll have to wait in suspense for our upper and lower levels.)

That’s our front yard, by the way.  We just cut a bunch of branches off our mostly-dead pine tree by the front window, with the plans to turn that spot into a little sitting area.  We live on a great corner with lots of passersby and since I love people-watching, I want a place to sit and enjoy the neighborhood.

Here’s the front entryway and stairs:

My mom bought me the two blue framed pictures to the right of the doorway a few years ago on a trip to Branson, Missouri.  I have been waiting since then to find a place for them in my home.  I love them here, and I love that whenever I see them, I think of her and I, poking around in old antique stores in 100 degree Missouri heat.

When you enter, this is  our main living space.  My plan is to add an area rug and some artwork on the walls.  This room also features one of my most favorite parts of the home, our bay window.  These pictures cannot do it justice – since I am not a photographer and have zero ability with any kind of editing software, imagine the most perfect lighting in the world and apply it to these pictures.  It’s gorgeous.

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Here’s our itty bitty dining area.  We bought this table with a bench seat so that it can be pushed in during the day when not in use – it’s perfect for us.  We can actually seat six fairly comfortably.  For gatherings, we aren’t really “sit down dinner party” kind of people, more like paper-plates-on-laps-in-the-yard, so this wasn’t a vital area in terms of space for us.  Still, it’s cozy, sweet, and perfect for our family meals.

Our kitchen isn’t huge, but I love it.  In truth, its size gives me a great excuse to banish my children to their playroom while I cook at night.  When I let him, John sits at the table and chats with me while I make dinner.  Most of the time, I kick him out too and enjoy 30 minutes of solitude.

Here’s the hallway from the living room/kitchen to the two bedrooms and bathroom on the main floor, as well as the door to the basement:

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I love bright and bold colors. So, while I will tell you that the downstairs bathroom was decorated “for the girls,” I will readily admit that if I lived alone, my bathroom would still look like this.  Both of our bathrooms are adorned with photos from my time abroad – this one features mi lindo Ecuador, one of my most favorite places in the world.

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The girls have been thrilled to have their own playroom, I’m sure just as much as I am.  I know this goes against what is popular right now, but once I had children, I really disliked the open floor plan that we had in our townhome.  Our family functions so much better in closed spaces, where messes are contained and I only have to clean a couple of rooms for the therapists instead of the whole house every day. 🙂

We had originally painted the kid’s bedroom in our old home with neutral colors, since the gender of each of the girls was a surprise.  I was able to use the decor from their old room in the new playroom.  All that we are missing yet are a couple of bins by the small table for their art supplies and the word “PLAY” in big, yellow letters up on the wall.

The last space on this tour is My Room, or the spare bedroom, or the office, or Oma’s room, depending on who needs it.  I have labeled it My Room, as the girls have their playroom and John has the basement.  All have been warned that if they want to enter, they must ask, and that it is not a dumping ground for The Stuff That Doesn’t Have a Place… because in this house, if it doesn’t have a place, it goes bye-bye.

I’ve been saving old calendar pages from my favorite Anne Taintor calendars for years to hang on the wall.  You know, things like this:

Once I get the frames, I’ll put them up on the walls…  But even as is, this is my little comfort zone:

The last piece of something that hasn’t found a permanent home is this sign, purchased on Etsy when we first moved in.  I adore it, and I’m still thinking about where it will permanently hang in our home.

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We are so thankful for this little, yet huge house that we can call our home.  When we moved, I wrote about how happy we were, smushed into our old home.  And guess what?  We’re happy here, too.  It suits us, and our needs, and we couldn’t be more thrilled that the only home we looked at, the one that just popped into our lives on a whim one Saturday, is now etched into the story of our life.  Perfect. ❤

 

 

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Size Matters


(Ellie and Tessa in the same 4th of July outfit.  Ellie is one. Tessa is two and a half.)

Two and a half.

25 pounds soaking wet.

A little tiny package bursting with laughter and joy and sunshine.

Our park district has an amazing indoor play area where we like to bring the kids to get their energy out.  It’s huge, with oodles of slides and soft-cushioned obstacles to climb through and around. They have an area that is just for little ones and it is there that we like to let Tessa roam free and explore.  Mostly because it is caged and keeps her out of trouble. 🙂 

There are, of course, other children in the play area and I am so often amused when I see her surrounded by infants.  The sheer size of her peers is so markedly different.  And inevitably, another mom will come over to make conversation, hoping to commiserate on the exhaustion of having an infant in the house.

I wait for the question.  I know it’s coming because it always does.

“She’s so cute,” they say, “how old is she?”

“She’s two and a half.”

Inside, I cringe and wait for the response.  They vary, but usually it involves an effort to restrain eyes bugging out of their head and an oddly confused smile.  “Oooh,” they say, their eyes darting back and forth between my child and theirs, sizing up the differences.  Mostly, the conversation kind of dies.

One time, a mom literally asked me if I was sure.  She shared that her daughter is that same age and asked when her birthday is.  She thought I had miscalculated my own child’s age.

That was awkward.

A small part of me just wants to lie when I get asked.  Would it be any easier to just tell them she is 15 months or 18 or whatever number I feel like throwing out?  Maybe I’ll really wow them and say that she is 10 months.  That could be fun!

I think, as parents, we might all be happier if we could just stop asking each other how old our children are.  It does nothing good – just feeds into this urge to compare.  And what good are comparisons anyway?  One is potty trained, one isn’t. One is reading, one isn’t.  One is sitting or walking or talking or whatever.  Some are not.  They are not less.  Different, perhaps, but not less.

But more than that, I’m sad for the conversations that die out.  Our experiences are probably a little different in parenting, there’s no denying that.  But we can still share.  We are parents in the same community.  Our children will grow up near each other.   Commiseration gets us through some days!!  And even if my little one is on the scenic route, she’s headed in the same direction as all the other little ones – up, up, up.  I’m just a mom.  She is just a kid.  So let’s talk!


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Finding a place in the Land of Mom

I am slightly envious of the moms who got to mother before the Internet age. I don’t know what it was like back then, but it feels like finding a niche now must be far more complicated than it used to be.  

Did so many styles of family life exist before the Internet??  And, perhaps more importantly, are there any moms out there who don’t think about mothering much at all??  Most of the time, that’s where I am at – I mother based on instincts, not thinking much about it, doing what keeps the family moving forward.

I feel like all the moms around me have a style, but somehow, I’m lacking.  They are gentle moms or tiger moms or organic, chemical free moms, or moms that love Lysol.  Pinterest moms, soccer moms, dance moms, CEO moms, hyper-anxious moms, free-range moms, helicopter moms, non-vaxxers, bed-sharers, formula feeders, homeschoolers…. And I’m just over here trying to keep up with the laundry.

Sanity ended 4 years ago, my friends.

The world of parenting a child with special needs, and then the subset of parenting a child with Down syndrome, comes with its own little mom-cliques.  We have the supplementing moms, the inclusion army, the self-contained special Ed advocates, a whole new category of babywearing mommas, pro-therapy, anti-therapy, diet restricters, moms who still love Kraft Mac and Cheese.  There are moms who want to ‘fix’ the issues that their kiddos have and moms who want to let them be just as they are and to hell with society and their silly standards for acceptable behavior!

I have tried to figure out where my mom identity lies.  This has been rolling around in my mind because John and I attended an informational session about drug trials that are happening for medications that would improve the cognitive function of people with Down syndrome.  It was fascinating and thought-provoking and has left me quite stumped.  

If there were a pill that would help Tessa think, would I give it to her?

A mom in the group raved about the trial that her daughter was a part of.  She says that her daughter’s holistic doctor (what is that??) believes that she is on “something” and the mom has seen some big differences in her daughter’s independence.

But would I give it to Tessa?  Even if I knew it was 100% safe, do I want her to take it?  Does it change who she is?  Does it send a message to her that she needs to be somehow better than what she is?  And when does it become her choice rather than mine?

We are not on a mission to “beat the odds.”  We have never set out with the expectation that Tessa do any more than be her best self, just as we expect from Ellie.  Does medication help her do that?  Is treating her cognitive functioning level the same as someone with ADHD taking Ritalin or someone with depression taking Prozac?

Am I okay with this?  Am I a part of that group of moms?

I don’t know.  I just don’t know where I fit in.  I like real science and double-blind studies and factual information.  I like routines and structures and personal space and kindness to all.  I like knowledge and teaching my kids about all kinds of stuff.  I like to parent without thinking too terribly much about it… But this medication question has got me wondering – if it goes to market and is an option for Tessa, what kind of mom will I be?
One year ago…  

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