Yo soy La Lay

adventures in family, faith, and Down syndrome

Ready to write 

The only way that I can really describe our last two weeks is that we are careening wildly into October.  Think big minivan speeding around the corner, precariously tipped on the two side wheels, while the driver wills the giant piece of machinery to correct itself before it tips.

Yup.

One sick parent, one messy house, two worn out kids, work chaos, meeting chaos, life chaos.  Someone send over some chocolate.  And wine.  Or maybe it’s more time to break out the tequila!!

But what else is new?

Saturday begins Down Syndrome Awareness Month.  While the rest of the world goes pink for Breast Cancer, we’ll sport our blue and yellow instead.  If you’ve been around for a little while, you know that in October, I participate in the 31 for 21 Blog Challenge.  For the past two years, I wrote a post every day in October.  This year, I’m taking part again.

In year one, we wrote about 31 things that we learned since we had Tessa.  In year two, it was 31 ways to advocate.  For year three, I’ll be writing 31 open letters to people who have somehow impacted our life since December of 2013.  I’ve been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign, in which parents are sharing letters that they have written to the individuals who delivered the initial diagnosis of Down syndrome.  I’ll be posting one of those as well, along with 30 other letters throughout the month.

I am going to miss someone.  I know I will, it’s inevitable and I apologize in advance, whoever you are.  Honestly, with this focus, forgetting someone is my biggest fear because I don’t want to hurt any feelings.  But this is where my heart is calling me this month.  I hope you’ll join us.

Who’s ready for October??

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Retreating

I told you, I had the most amazing weekend at the DSDN Rockin’ Mom Retreat.  It’s Tuesday and I’m home surrounded by the same old stressors, but I’m still riding the wave.  I feel lighter (trust me, I’m not); my mood has lifted.

Many at home have asked about my trip.  I want to tell them – but a small part of me panics just a little at the question.  It’s like that time was somehow sacred, like sharing our experience is somehow like telling a secret or sharing what happened in Vegas…  It’s nothing confidential, but my heart wonders if the magnitude of these connections is in any way relatable  to those who are asking.  

Two years ago, when I joined a DSDN Rockin’ Mom group, I ‘met’ a small group of moms with children around Tessa’s age. Meeting them in person is not something I thought, at the time, would ever happen. On Friday evening, as I made my way down to the conference room, I was a bundle of nerves. I wondered how I would insert myself into this gathering; after all, only two others from my original group would be present. But then one mom took me under her wing and helped me find a table… and a margarita. The moms at the table chattered away with me like we had known each other forever.  Not long afterward, I got to hug Brooke, whose son is Tessa’s long-lost partner-in-crime. They haven’t ever met, but I swear that they are yin and yang.  So too are Brooke and I actually.  It was so, so great to give her a real hug instead of a virtual one!!

We had the opportunity to listen to some phenomenal speakers who have paved the way for our own children to be included in their schools.  Sandra McElwee came from California to talk about Sean, then left so that she could attend the Emmy’s with him for Born This Way (which, if you haven’t heard, WON).  I will readily admit that I was too shy to say a word to her.  Yes, I was shy.  Her story was awesome.  We got to hear from Laura Buckner about creating a pathway for school inclusion – I furiously scribbled notes (pages of notes) while I listened to her, soaking in every tidbit that I could so that I could prepare for our own race.  And during our breakout sessions, I sat with a small group of writing mommas and Mardra Sikora, who is a published writer… and so is her son, Marcus, who has Down syndrome.  My take-aways from Mardra were to write often, to write with a purpose, and to write my own story, not that which I think others want to hear. There was more… so much more, from each of these ladies and others.

At meal times and in the evening, we bonded over wine and stories of our families and lives. There were no filters, no apologies, no need to explain the nuances of life in our homes.  We processed through the words of the speakers, grappling with choices about schooling, and therapy, and holding our children accountable.  We listened to each other talk about the struggles that we are facing with services or schools, but also shared in the great joys and successes of our kiddos.

On Saturday we went to a Biker Bar (which was supposedly not a biker bar… Yeah, right) and that’s all that needs to be said about that.  Sorry to the poor teenager who decided to venture out in a unicorn costume… I guarantee that she had no idea what was coming when she made that wardrobe choice!  

(I can also pretty much guarantee that her dad will never let her in public dressed like that again for fear of another swarm of unexplainably-overexcited moms mobbing his daughter.)

My alarm went off too early on Sunday and it was off to the airport.  Sitting with my book and hot coffee, I was approached by a woman who told me that she had written some of the Chicken Soup books.  She asked me about my a World Down Syndrome Day shirt and my daughter.  She said she normally sells skin care products, but not to me because I was glowing… and asked for my blog because she said she thought my story was a good one and that I seem grounded.  I share this because “glowing” and “grounded” are not words that I would have used to describe myself anytime in the past 12 months… But two nights in Dallas with 120 Rockin’ Moms will do that to you.

We are the lucky few.

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Home again, home again.

I’m soaking in the last few minutes of solitude.  Through a series of events, it happened that I ended up checked in for my flight and at the gate about three hours early.  And it’s good.  Good people watching, good decompressing, good reflection.

It was such a great weekend.  I’m tired and ready to come home to my loves, but wow.  This trip was exactly what I needed.

Texas is big and flat and though I barely saw anything while I was here, it’s now officially on my list of places that I actually do want to visit.  I don’t think I met an unkind person while I was here.  I didn’t venture off the hotel property much, but enough to feel welcome and loved on by all the Texans I met.

I didn’t come to this retreat with any burning questions, but I have left with answers to questions I didn’t even know I had.

It’s amazing how quickly the awkward “I know you online but who are you?” faded into easy conversation with what felt like old friends.  Wine helped with that, but so did the feeling that these women, they are my people, my tribe.  There were laughs and wows! and ‘hey, I totally get you’ moments… Kleenex boxes at the tables wiped away good, cleansing tears and we just enjoyed each other for 48 hours.  

I’m excited to come home.  I’m tired, but refreshed.  I’m reflective, but forward-thinking.  I’m ready to put my nose to the ground and do the work.

So, so good.


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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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Incomprehensible

This morning, with her little button nose smushed up as close to me as she could get, Tessa sang me a song.  I couldn’t understand the words, but her smile told me it was a sweet one.

My day has been filled with moments that I want to freeze in my memory.  Like for many around me, it is hard to digest all that has happened this week.  I find my breath catching in my chest as I soak in the calm breeze in my backyard, or my sweet five-year-old chattering with a robin outside her window.  

We have so much.

I did not wake to the news of Dallas this morning.  Before the national news, another devastating headline about a former student crossed my feed.  He, a troubled child, too adult before he was ready, sat in my study hall not too many years ago and dared me to attempt to control him.

I won him over, quickly, with patience and Jolly Ranchers.

I never found anger to be a useful tool, nor lectures.  I don’t know that either can help a person gain perspective or bring warring sides together.  But a show of love to the unkind, the hurt, the confused – that has seemed to build bridges, at least in my life.

Just a couple months ago, that student crossed my path again, sitting in the office of our building, inquiring about how he might be able to finish his high school degree.  

He had been through so much.  Made so many bad choices.  An adolescent with a brain that did not work like an adult’s, thrown into Big, Heavy situations long before his mind could control his body as he needed it to.

I do not know what chance he will have to finish now.  We could not save him.

Today I have soaked in every little privilege that my life circumstance has afforded me – the pile of books on the playroom floor, which my girls have been raised to love, the box of chocolate from my loving and devoted husband, fresh, clean clothes and our own laundry machine in the basement.  Clean water, clean home, stability, resources, safety, education, love.

We have so much.

I can’t imagine the lives of those who do not live as I do, but I understand that by pure chance, it has been different. And so I learn as much as I can.  I pray and try to be kind and gentle.  I don’t know what else to do.  I don’t know what words to say.  I don’t know how to stop the hurt.

This morning, Tessa sang me a song.  Her sweet words were incomprehensible, but beautiful nonetheless.

We have so much.

Someday I will understand.

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The Walker

Ok, let me level with you here.

This is Tessa’s walker.


I hate it.

We have actually had it in our home for quite some time.  It largely sat unused for several weeks, a giant elephant in the corner, taunting us with it’s slick silver bars and fake leather arm support.

Have I mentioned that I hate it?

I hated her orthotics just as much at first, though now that hate has mellowed to a slow burning irritation.  I struggle quite deeply with the fact that her disability is worn on her face.  I know that there are equally as many drawbacks to having a disability that is not visible to any Joe Schmoe, but I wish that I knew that some people, some day, would pass her on the street and not just see Down syndrome.  When there is equipment, well, it just draws attention to her challenges.

In any case, we have the walker now and while I hate it, I have had to slowly come around because it is what she needs right now.  So much of parenting is reminding myself that it’s not about me; it’s about my children and their lives and doing what is best for them to grow strong and independent.  So while I may carry my own insecurities about people having pity on the girl with the walker, the more important cause is helping Tessa get up on her own two feet.

How challenging it is to see our children fight their own battles!!

The milestone of the day for us (me, really) was that we took the walker out of the house for the first time.  When Tessa’s therapists came, they suggested a session in the park a short walk from our house.  So off they went, and Tessa, strapped into her little walker, just raced along the path, shuffling her little feet as fast as she could.

She, the child who cried at the site of her walker just three weeks ago, went about a quarter mile – all the way to the park, actually.  She made it.

It’s not about me.  It’s not about the people who gawk as they drive by us peddling on down the road.  It’s about Tessa, and it’s about getting her wherever it is that she wants to go.

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