Yo soy La Lay

adventures in family, faith, and Down syndrome

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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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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My Beach Body

My Beach Body has stretched to grow three humans.  It has a hefty amount of stretch marks and a tummy that looks kind of like a deflated balloon.  It’s smushy and cozy and not on my list of “immediate concerns.”

At not-quite six weeks post-partum, my Beach Body is ready for the bathing suit I just bought to accommodate a pooch.  It is ready to splash in the pool with my girls and to enjoy a wine spritzer while lounging in an Adirondack chair and reading Rachael Ray magazine.

Next summer, my Beach Body will likely still need that same suit and that is OK.

You see, my Beach Body, which looks nothing like the Beach Body of my early 20s, is healthy and fulfilled.  It enjoys a lean protein and vegetables for lunch and dinner, but also the chocolate that follows once the kids are in bed.  My Beach Body now is not longing to fit the size 4 wedding dress stashed in my daughters’ dress up bin.  It isn’t even reminiscing about all the size 6 pants that I donated when Tessa was born.  It thinks a little about the 8s and 10s that are in the back of the closet, but is comfortable in maternity shorts and size 12 for now.

Twice a week, sometimes more, my Beach Body takes a walk around the neighborhood, all by itself, and truthfully, rocks out to those boy bands from the early 2000s that I still can’t quite get enough of.  It doesn’t go quickly, or break into a jog, but it moves.  It shows my girls that they can take a moment to breathe, to be in solitude, and to step away from the world’s chaos for 30 minutes.

My Beach Body wants my precious girls to know that they can go to a birthday party and enjoy a piece of cake.  It walks those girls to the ice cream stand down the street and does not feel guilty about a chocolate-dipped cone with sprinkles.  It doesn’t need wraps (thanks no thanks, random Facebook acquaintance that I haven’t spoken to in 10 years) or shakes.  It doesn’t believe in cheat days, but in moderation.  It feels balanced.  Chubby and healthy and balanced.

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Dear Jefe

Dear Jefe,

Well, this isn’t exactly what we had planned, is it?

Can you even imagine what the two of us would have done if we had seen our life at 31 when we were just college babies?  My goodness, we have come a long way.

It was always my intention to write this letter right away, and I’ve been starting it over and over for like 20 days now.  It’s just time.  So here goes:

I love that you were so jumbled up when Tessa first joined us.  I think it shows how much you really care about your children and their lives.

I love that you let her beat up on your treasured Taylor guitar.  It makes her so happy.

I love that you worry so much about Ellie finding her own way.  And when I tell Ellie that her college is already picked out, you are right there telling her that she can pick whatever school she wants… and also reminding me that maybe Tessa will be the one to go there instead.

I love that you still try to make sports be a bonding thing with the girls, even though after 5 years, Ellie still doesn’t even understand that the Cubs and the Bears play different sports.  She’s got a lot of me in her.  There’s still hope for converting Tessa.

I love that you will do “mom” things.  I want you to remember that you did say that you want to do PTO.  Just putting that out there.  On the internet.  So that we all know you said it.

😬

I love all the ways that you help me and our families.  I love that you do the tables at family parties and that you help me put the dang Christmas tree up when you would rather be doing 87 other things and that you bring me fresh ice water at night and all the other things.

And, because it’s 31 for 21, allow me to say this:  I love your advocacy.  I love your willingness to understand Tessa’s needs and to fight for her rights.  I know for certain that NO adult believes in her the way that you do.  I love that you are raising her to be as kind, polite, respectful, and helpful as we expect Ellie to be.  Thanks for the reminder that Tessa is so ready to have time outs and to use her words.

You are absolutely the best father that these girls could have.  And on top of that, you’re a rockin’ husband as well.  And while this letter isn’t nearly as witty or thought-provoking as I would have liked, thanks for being the kind of man who will love it anyway.

I am so thankful that you picked me and I, you.

Love,

Mags

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Dear Nieces and Nephews

To my darling nieces and nephews,

I really love being a mom… and probably equally as much, I love being your aunt!!  It makes me so happy to watch you all play and learn and grow.  This weekend, I got to see all eight of you and boy, it was so much fun!!

You are all so different and that is fun to watch.  You all love to play the things that are most exciting for you… and as I watched this weekend, I saw that you each play in your own special way.  Some of you are bossy, some of you are not.  Maybe you are quiet or silly or sweet or grumbly.  One or two of you like to play one-on-one, where you are alone with an adult or just one cousin.  Some others like to put on a show for everyone.  I know that some of you are starting to notice that Tessa is a little different than everyone, too.  She has some different things that she uses, like her leg braces or her walker.  Sometimes she says a lot of words to you but you can’t understand what she says.  Or she uses her hands for sign language.

All of you are growing fast fast fast, even Tessa.  It’s hard for her to walk or talk like you big kids, so I know you sometimes forget that she is not a baby.  I love when she plays with you!  I hope that when she sees you run, she’ll want to run too!  She learns a lot by watching what you do.  That doesn’t mean that you always have to be on your best behavior when you are around her (but you do have to be on your best behavior because your parents say so).

If you have questions about the things that she does, you can always ask me or Uncle Johnny.  What is most important is that you just keep playing with her like all the other kids.  She is a tough little girl, just like the rest of you, and she just wants to do the things that you do… it just takes her a little longer to learn how.

Love you guys!

Auntie Mags

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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 Mom

 Dear Mom,

I’m not always sure that I can do this right, truth be told.  In my hardest days, I wonder too much if I’m making the right choices for both of these girls.

You believe in me.

Moments into our new reality, you were there, rooting for Tessa and us and the choices that we would make.  When the nurses told me that you had come, thinking that you would just be bringing John a sandwich and hunkering down to wait for Grandbaby #4, there was not a single hesitation in my mind about letting you into our odd little vortex right from the beginning.

When we asked you if we could move in with you and Dad so that we could provide a great educational experience for our children, you didn’t bat an eye.  You both took us in, with all of our mess and chaos and annoying habits.  You care for my girls, help Tessa with her therapies, and love fiercely on Ellie so that she never feels forgotten.

You learn with us and we are so thankful for that.  So many families don’t have the support that we have.  You are teaching others how to see our child as we see her, as just one of the members of the goofy little grandbaby clan.  You read books, you attend seminars and watch webinars.  You’re giving up an entire Saturday to attend a conference so that you, along with us, can help us provide Tessa with all that she needs to live her dreams.

Much earlier this year, your health concern rocked me.  My mind went wild, as all of ours did, and for days and days, I would spend my commute fighting back tears of worry that I would have to face all of the things, good and bad, without you.  I am so very thankful that you are here and that all is well.  I am thankful that my little ones have lots more chances for sleepovers and Mimi and Ellie Days and baking cookies and reading books… that they will get to feel all of the love that I have felt as your daughter for so many years.

I love you!!

Mags

PS – Good Lord, will there be a letter this month that I can get through without crying???  I’m not off to such a good start!

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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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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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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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Treetop Love

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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The Flood

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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