Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear 31 for 21 Blog Challenge

Dear 31 for 21 Blog Challenge,

By about this time of the month every time I do this, I’m drained.  You kick my butt every single year.  Not that we ever have a quiet month, but holy guacamole is October busy!!

The interesting thing about this part of the month is that while I’m limping toward the finish, I’m also freaking out a little on the inside about how I’m going to get it all in.  It’s a funny thing, this writing business.  The Type A in me sits down in late September and makes my list of topics… and then oh!  look!  wait!  no, that thing!

And I’m off track.

There are only 11 days left – and there are two already written and at least one more from John that he needs to write and the girls and my husband of course, but I’ve got a zillion others on my mind that I have to somehow fit in and like I said in the beginning, I’m not going to get them all.

That’s part of why I like you, Blog Challenge.  I love to write.  And you are like a little Personal Trainer for me, pushing me to get through and then then keeeeeep going.  I write because I think it’s so important to demystify our life for others.  But I also write because it’s good for my soul.  I’m allowed that one thing, aren’t I?  And when I stretch the writing muscle, I keep going.

So thank you, 31 for 21 Blog Challenge, for pushing me to pause and reflect, to center myself, and for giving me a chance to delve into some topics that are important to us.  Thanks for introducing me to so many other moms who write.  Their stories continue inspire ours.  I’m shaking my fist at you tonight, but kindly, because in truth, I am thankful that this Challenge exists to reignite my fire.

Best,

La Lay

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Dear Marcus

Marcus,

Dude, my kids love the book that you wrote.  Black Day: Monster Rock Band is a great story!  Every single day, they come home from school, throw down their bags, and beg us to play the Black Day DVD on repeat.  Then we read the book before bed.  My husband is learning to play the song on his guitar so that they can sing it all the time.

Image result for black day marcus sikora

We love Halloween in our house, so the story is perfect, especially for this time of year.  I asked Ellie to tell me what her favorite part of the story is and she told us “pretty much everything.”  Tessa loves to sing the song.  It’s still hard for her to sing most of it, but she is really good at saying “black day” now.

We are so glad that we got to meet you at the NADS Conference.  Ellie tells all her friends that you signed her book.  It made her so happy.  Your mom is so awesome!  I hope you can come back to Chicago again soon.  My girls would love to meet you!

Let us know when we can buy the sequel!

Maggie

Marcus is a 26-year-old story teller who happens to have Down syndrome.  You can read more about Marcus’ book here, as well as buy a copy for your family.  I highly recommend it!  It is perfect for Halloween.

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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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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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Electric Fingers and a call to deep kindness

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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Special Needs Mom Law #2

So I guess I fit into the category of a Special Needs Mom now, though I’m not exactly sure what that means.  So much of Tessa’s care seems similar to Ellie’s.  Slower, perhaps, but the same.  

Nevermind that whole week we just spent in the PICU, of course.

Still, after I told you all about my fear of Mom Jeans, I’m trying to put some goals in writing to maintain…  maintain what?  I don’t know.  But as my blog friend Jill (and fellow Ds momma) put it, we are trying to avoid being those unfashionably fiery and crazy Special Needs Moms in our nightmares.  I’m pretty sure that fiery and crazy is gonna happen sometimes, but we plan to do it without looking and feeling like a wreck. 🙂

My Special Needs Mom Law #1 is “Put your own oxygen mask on first.”  Thanks to Beth, our NICU social worker for that one.  No mom jeans allowed.  No laundry on a Friday Night unless we’re going on vacation the next day.  My Law #2 is “Celebrate the typical children, too.”

My Ellie Bean is bright and fun and fabulous… and she does some really awesome things!  I fear minimizing her accomplishments because I know that Tessa’s won’t come as easily.  But I need her to feel important, special, and loved just as much as her sister.  And so I present to you Ellie’s milestone of the week:

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That’s her name!!  She can write her name!!  We had been playing a lot with the Writing Wizard iPhone app, but I had not seen her skills transferred to paper.  My mom showed me that she could write the letters with a marker last week, but I really needed to see it for myself.  So we pulled out her little whiteboard this morning and she showed me.  I’m so proud.  🙂

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