Yo soy La Lay

adventures in family, faith, and Down syndrome

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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Oct 31

Advocacy #31: Imagine what if….

by Maggie

For 31 days, we have shared a lot about what advocacy means to our family in our little corner of the world.  On this last day, I invite you to image what if with us.

IMG_9574What if we stopped equating smart with successful?

What if we believed that those who are not “smart” still have something to contribute?

Imagine a mom getting a diagnosis of Down syndrome in a world where it didn’t matter if her child would be smart.  What if she knew that the child would be accepted, taught, cared for, and loved regardless?

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What if we presumed competence in all?  And when someone doesn’t understand, what if, instead of being frustrated, we reacted with patience and love?

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What if we stopped believing that a classroom of learners who struggle is a “dumping ground”?

What if we stopped encouraging families touched by disability to band together in separate places and in separate communities and just embraced everyone?

Imagine parents learning that their child has Down syndrome in a world where they knew that their schools and communities wouldn’t bar them from participating in classrooms and activities.  Imagine never questioning whether your child would be allowed to participate in birthday parties, field trips, assemblies, or just in plain old school.

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What if we stopped believing that the brightest are the best and instead believed that those who are joyful, humble, caring, and kind are what we need most?

What if we stopped seeing advocacy as a way of “helping the less fortunate” and instead just saw it as being a human being?

What if we stopped seeing the disabled as less-fortunate altogether?

What if we always, always chose kind?

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What if we could see beauty in the differences that make each of us unique?

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What if we respected people’s feelings and beliefs and didn’t walk through life with the attitude that a different perspective makes someone a bad person or less worthy of kindness and love?

What if we could stop seeing another perspective as an attack on our own thoughts and feelings?

What if we just chose love?  Always.

YOU can make the difference.  YOU can be the Hands and Feet.  YOU can advocate in small ways, big ways, in thoughts, in actions, with money, with words, or with nothing but kindness.

I have a playlist on my iPhone called “Fight Song.”  It is made up of a series of songs that I find motivational and I listen to it on my way to work every single day.  It’s not that I need motivation to go to work everyday. I actually really love my job.  And it’s not that I’m fighting anything or anyone in particular at all.  These songs just tend to fill me up with the energy and positive feelings that I think are so important. They remind me to be brave, to be kind, and to do good.

The first song, the song I start each and every day with, is below.  As a last thought, before we go back to our regularly scheduled program of family antics and less-relevant rambling, I encourage you to watch the video, listen to the words and imagine if this song could drive what you do every day.

Imagine if this is how we lived.

What if?

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Oct 3

Advocacy #3: Give us a smile

by Maggie

con·spic·u·ous

kənˈspikyo͞oəs/

adjective

1. standing out so as to be clearly visible.

2. attracting notice or attention.

synonyms: easily seen, clear, visible, noticeable, discernible, perceptible, detectable; person with Down syndrome

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That’s reality right now.  Not that everyone in the room notices us, but that everyone in the room who does notice us can see that we are different.

We have run the gamut of responses to Down syndrome (remember this guy??).  Not all responses are negative.  Most, in fact, are quite benign, even a little sweet.  And they bring me to another little way that you can advocate for people with Down syndrome: smile.

Smile at everyone you meet on the street.  Good or bad, rich or poor, sick, healthy, clean, dirty, happy or sad.  A smile says “Hey, I see you, human being.”  I’m not saying you should fawn over every individual that crosses your path, nor should you go out of your way to grin awkwardly at someone who is different.  I’m saying that it is pretty cool if you let your eyes meet someone else’s (anyone else’s) and allow yourself to smile.  And though you may think it far-fetched, it’s advocacy at its finest.

You see, when you share a smile with the differently-abled, the marginalized, those on the outskirts, it’s not really about them, it’s about the others in the room.  It’s about showing the world that it’s cool to be cool with everyone.  When you treat everyone who looks a little different with the same dignity and respect as you would that nice-looking, decently dressed human being walking toward you in the grocery store, it sends a message.

We are all humans.  Advocate for the humans by smiling kindly at the humans.  You can’t go wrong with that.

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Jul 12

Electric Fingers and a call to deep kindness

by Maggie

Sometimes, time passes between posts and I can barely feel it.  Life heads full speed ahead and there’s no time for reflection or much thought at all really.  Writing, my vital outlet, is shoved into some back corner of my life, jammed in between long discarded hobbies like getting manicures and scrapbooking.

But on other occasions, I feel the distance between my schedule and the thoughts rolling around in my brain.  There’s an electricity in my fingers, an itch to sit in front of a screen and get the words out, but sweet time escapes me at every turn.

This is why, at 11 pm while my family is well off on their nightly journey in the Land of Nod, I’m tossing and turning.  The weeks since my last post, while not overwhelmingly interesting to any outside reader, have been powerful.  In the clearing out of our first home and subsequent return to the home of my adolescence, self-reflection has been running rampant in my brain.  Maybe it is just the big, gulping breath of the freedom of summer, maybe it is all of the transitions happening to me and around me, but I seem to be stuck on ensuring that I am being the best that I can be for my husband, my children, my family, my coworkers, my world… and a disappointing feeling that I am not sure if I have done this well in most recent times.

This morning in church, our pastor gave a phenomenal message about the spiritual importance of kindness.  While I spent so much of his sermon wrangling a squirmy and overtired 4-year-old, I desperately clung to the words he shared, feeling as if God had put me into that pew for a real reason today.  I have written much about being kind and try to live it when I can, but I wonder if I have truly accepted the call to love thy neighbor… all of thy neighbors… and to show kindness to all, even the ones who challenge me or grate on my nerves at every turn.

The greatness of God’s grace is that we can fall short in the task of caring for our fellow man and still feel His love and acceptance.  But this kind of deep kindness that has been on my mind today is the core of what I’m asking the world to do for my own child – to love her, unconditionally, without doing so out of guilt or charity.  Have I done this as often as the opportunity has arisen?  Even with those who challenge every moral fiber of my being?  And if I have not been able to do so myself, how can I ask it of anyone else? 

Deep kindness in action.  Be the hands and feet of God.  Go to it.

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