Yo soy La Lay

adventures in family, faith, and Down syndrome

Jul 23

Size Matters

by Maggie


(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!


Language and Feelings

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Jul 8

Incomprehensible

by Maggie

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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Jun 29

The Walker

by Maggie

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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Jun 27

Ellie turns five

by Maggie

My favorite four-year-old is now five.  


Truly, this year with her has been one of my favorites.  She has always, always been an accidental comedienne, and as she grows, the punch lines just keep on coming.

There was a time last year when I thought maybe she was going to be more introverted.  She was suddenly very fearful of others outside of her immediate circle.  She preferred to play more on her own, and when we laughed at her Ellie-isms, she would get upset or cry.  

She doesn’t always understand why we are laughing now, but her concern about our response has faded significantly.  She loves knock-knock jokes and silly voices and playing pretend.


She asks a lot of big, grown-up questions these days, like “Mom, what’s sacrifice?” and “What’s your soul?”  The other day, she wanted an explanation of puberty.

That was fun.


Still, as surprising as it might be, she is a rule-follower.  She does not like to disappoint people.  I remember this year when she was very sick and missed a week of school.  The night before she was going back, she told me that she was worried that her class would be mad at her because she had been absent.

She is so much of John and so much of me that it is impossible to separate what she gets from which parent.  She loves limits, but loves to push them.  She cares deeply about people and loves to be with others, but needs urging to feel comfortable reaching out to new faces.  She seeks the thrill of risks, but waits for a detailed explanation of how it will work and then a guiding hand to make sure that she is OK the first time.  She is firmly planted with one foot in the familiar and one foot Beyond at all times.


This year, she will go to Kindergarten and branch out to a whole new set of people and experiences.  I’m nostalgic today, but equally excited to watch this little one bloom in a rich learning environment, as she has sought out information and facts and ideas since she was much, much smaller.  Every night, my prayer is that she continue to love the way she loves and continue to learn the ways she learns – and then that she use her talents for good.


The sheer terror of letting her loose in a great big world is inexplicable.  However, the joy of watching her grow is even greater. 


We love you, Ellie Bean!!  Happy fifth birthday!!

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Jun 25

Treetop Love

by Maggie

Some of my most favorite places in my Rolodex of memories are high up in the trees.  I have always loved the birds-eye view, the ability to just look out on the world and soak it all in.  As a child, I remember sitting at my upstairs bedroom window, which faced the street, and watching the teenagers walk home from our local high school, which was about 50 yards from our home.  I loved to examine their fashion, listen to their words… It intrigued me.

In the back yard, there was a crab apple tree with the perfect little notch for sitting with a book to read.  My brother and his friends preferred the big maple tree for climbing high, high toward the sky, but not I.  My love of looking out at the world has some limits – like a thick, strong window or the need to feel like even if I fell out, I wouldn’t die.

In high school, there was the hotel at Monte Verde in Costa Rica.  When most of my friends took the zip lining tour, I preferred to walk the bridges high up in the treetops, looking out on the lush forest below.

The fifth floor of the library at Augustana, my little dorm room high up in Andreen, looking out into the treetops, so many memories of the calm that comes from looking out into a beautiful green landscape.

I tell you this now because we are home and it is lovely and there are trees – so many trees.  I mean, these are the views from our bedroom windows.  


In the morning, before the chaos of the day begins, this is my first view of the world:


The flood of memories and peace it brings to me, to feel that I am waking up in a secluded retreat every morning… it’s one of my most favorite parts about Home.

Stay tuned for more Home, coming up in the next few weeks. ❤️

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Jun 5

Control Freak

by Maggie

If our children always did what their parents wanted, we certainly would not have Chicken Baby in our home.  If you haven’t met Chicken Baby, here he (it?) is:

I am uncertain who thought it would be a great, marketable idea to put a Cabbage Patch doll into a chicken costume, but there he is.  And he’s aaalllllll ours!!  (And by ours, I mean Tessa’s.)
Who would choose this creepy little creature as a comfort object??

We acquired Chicken Baby on one of our nine bagillion trips to Target in the last three weeks (because new house, of course).  If children always did what their parents wanted, Tessa would have behaved herself on that trip, and we never would have ended up in the toy aisle, searching desperately for a soothing object that cost five dollars or less.  An entire rack of cute stuffed animals were lined up in front of us and we got Chicken Baby.  

I didn’t go into parenthood with many preconceived ideas of who my children would be.  I assumed that we would get some extroverts,  because we are.  I assumed they would excel in school.  I knew, before parenthood, that I could keep my girls from having a princess complex.  No pink frills, no referring to the girls as princesses. 

Last week at preschool graduation, Ellie was the only girl in the class who said that she wants to be “a princess” when she grows up.  

So there’s that.

One of the most difficult parts of parenting for me is letting go of my desire to control the choices that my children make.  They are young – we are not grappling with major life decisions here, but sometimes John lets Ellie pick out her own outfit and it makes me twitch just a little.


Or when she refuses to dress her Barbies and I continually have to encounter Awkward Barbie Moments… 

(This is tame.)

It takes every fiber of my being to Let. Go. on a regular basis.  It’s Type A parenting, desperately hoping to be just a little Type B, for the good of their development as independent women.

I think having Tessa has pushed me, just a little, to embrace the path that my child will follow, whatever that may be.

(OK, not whatever.  Bank robbery and juvenile delinquency are off the table.  As are jobs at establishments where women wear spandex shorts and push up bras.)

In any case, my own personal preference for matching clothes and markers with their caps on correct color probably seem like small potatoes, but I’m trying to use these situations as practice for the Big Ones, like choices about college and living arrangements and buying ridiculously overpriced clothing because it’s on fleek or whatever the new phrase for “cool” is at the time.

I feel as though they are going to give me lots of practice this summer.  And I need it.

Because seriously, the markers.


(Somewhere across town, my mom is laughing quietly to herself, smiling and saying ‘hehehe, now she knows what I went through raising her…’  I have an insane amount of respect for that woman.)

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May 24

Wait for it, wait for it…

by Maggie

I’m lounging in a little bucket chair, feet propped on a kitchen step stool.  I have placed a padded car seat headrest to support my throbbing feet.  There are boxes all over the living room, no furniture, but our TV is up and running on an old end table and I’ve got a tall glass of ice water keeping me (mostly) cool.  I have learned in the past few weeks that we are at a point in life where chaos does not suit us well.  Last week was an epic cluster of rushing around to do God-knows-what in preparation for 49 different line items that were a Very Big Deal.

In this very moment, I’m feeling like there’s no chance that we will catch a break and we’ll just keep barreling down the road toward losing it.

But.

In all of the crazy, there’s-so-much-I-can’t-even-make-a-list, what-the-heck-is-going-on???, there is also bright – a new, perfect home that is exactly what we need… two beautiful, healthy little ladies who, in the stress of all the change, still adore each other… our own, happy, loving marriage (about to celebrate seven years running).  Bright.


The days before my summer sets in are like this – this year more than years past simply because of the move (and the stomach flu, because why not?).  The long stretch is coming, the days of evening bonfires and the annual Mommy Ellie Zoo Trip and all the fun that is our favorite season will be here before I know it.  So for now, I’ll just seek out the small reminders of our blessings, knowing that the big, deep sigh of relief is just around the corner.

Summer….. Come on, summer!!

family

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Apr 21

The Tortoise and the Hare

by Maggie

Ellie is life in the fast lane.  Full on Autobahn, blink-and-you’ll-miss-it, one-stage-to-the-next kind of crazy.  She resisted some milestones, sure.  She waited to walk until the day before returning to daycare at 14 months.  She waited to potty train until the day before returning to daycare at just-over-three. But there has been no down time, no pause.  One day, she babbled, the next, full sentences. Seemingly overnight, she started reading.  We do not teach her these things, she is just a sponge, eager to fill with knowledge.  She learns independent of us.  We are just along for the ride through her life, holding onto the “oh shit” bar as she careens through each stage.

Tessa is the scenic route.  She is meandering through the hills and valleys, pausing to smell the wildflowers, nice and easy down the road.  We stop and look at the map frequently, making sure we stay on the course.  She gives us time to enjoy each phase.  She moves independently of us and the norms that others would deem appropriate.  We are along for the ride with her, too, basking in the sunlight in the backseat while she takes her own route.

Occasionally, my mind drifts to what a third child in our family could be like. Don’t get your hopes up, there are no plans right now. (We don’t seem to make plans anymore, as we know full well that our plans are small and God’s are greater).  I cannot wrap my head around a third – we have a tortoise and a hare, what next?  It’s just funny to ponder.

Free and easy down the road we go.  Kind of fast, kind of slow, but onward.  Always onward.

  

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Apr 16

The Flood

by Maggie

It’s coming…. 

Can you sense it?

I can.  I can smell it in the air, I can  feel it in my bones…

It’s writing season.

We’re baaaaaack!

 
When the air gets warm and energy goes up, when summer sneaks closer and closer, when time grows just a little more plentiful, my thoughts get antsy.

Writing season.

I’m an early morning writer, usually.  My favorite time to put pen to paper (or fingers to keyboard) is about 5:30 AM.  In the dark of the winter, it’s cold and burrowy weather and though my brain is awake at that early hour, my body digs in under the covers.  But the birds are chirping their good mornings again.  And my commute to work at 5:45 is suddenly looking a little brighter. Around me, the countdown to the end of the school year has begun.
It’s time.  The flood is coming.  The words, the thoughts, the memories waiting in the back corners are bursting their way out.

It’s so good to be back.

   
    
   

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Mar 22

Quiet

by Maggie

I have thirty minutes of complete and utter solitude right now.

This.  Never.  Happens.

I’m sitting in a rocker, in the sunlight, drinking a beer and listening to the sounds of birds and cars and the tick tick of the cuckoo clock across the room.  It is lovely.

(Of course, never mind that I gave up alcohol for Lent and it is Holy Week, which I am sure makes it worse.  Ellie tells me that God forgives and I believe her.)

Soon the children will be home and I’ll hear the stories of their day at Oma’s house.  We will be filled up with Ellie’s laughter and Tessa’s insistence for cookies (more cookies!!) and John’s chatter about his day.  It will be a different kind of wonderful.

But for now, this.

Quiet.

Calm.

Breathe.

Lovely.

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