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 Self Advocates

Dear Self Advocates,

I am so thankful for your voices.

While I love to read blogs written by the mothers and fathers of children with disabilities, it is your words that matter the most to me, your words that hit home.

There are more individuals living with disability who are sharing their stories than I could possibly list here.  However, Aubsome Aubrey, Anonymously Autistic, Tim Harris, the cast of Born This Way, and @djmpoweraz (instagram), you all give me a perspective that I could never get from just reading the stories of parents.

No one person can give the single story of what it is like to live with Down syndrome or Autism or CP or any other disability.  Collectively, your perspectives matter.  I thank you for being willing to share – because it helps me think about the decisions I make for Tessa so that she can be her best self.  Your stories give me pause; they open the eyes of the public to your joys and successes, as well as your trials and fears.  They teach us more about how to treat one another.

I hope you’ll keep writing or vloging or speaking or instagramming, or whatever medium you choose to be your megaphone.  You are making a difference in the lives of families by using your voice and our little ones will be better for the stories that you share.

Thank you so much for sharing,

Tessa’s Mom

 

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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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Basics, Year Two

One year ago today, fresh off our rocket launch into the world of Down syndrome, we (mostly I) started writing.  We began with the basics.  Today, an update:

This is what you should know about my family:

John – Husband. Age at this writing, just shy of 30. Married almost 6 years. Dad, teacher, coach, Fantasy Football Commissioner Extraordinaire. My best friend and favorite person on the planet.  Will give you the shirt off his back and then worry that he could have given you more if he had just thought of it at the time.

Ellie – Child #1, girl. Age at this writing, 3.5 years. Matter-of-fact, sweet, unapologetic, bossy. Self-described “goofball knucklehead bum.”  Still doesn’t color WITH you, but rather tells you what to color and expects you to do as you are told.  Uses a lot of big, adult words and phrases with perfect comedic timing.

Tessa – Child #2, girl. Age at this writing, 13 months. Active, sweet, chatty in small groups. Likes crawling around the house, dumping over bins of toys, and looking in the mirror.  Dislikes being left alone, especially at bedtime.  Her smile will melt even the coldest heart… as will her pout.  Has Down syndrome.

Me (Maggie) – Age at this writing, 29 (gulp.)  Educator (Division Chair/Spanish teacher/whatever else they need me to do). Personality? See Ellie’s description above. She is me, in toddler form (except for the whole “knucklehead bum” thing). I love inspirational quotes, chocolate, and margaritas.  I write for my family and my kids – but I’m happy to take anyone along for the ride who wants to join us.

Year two… let’s go!

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Lesson #17: Life doesn’t revolve around blogging

This is part of the 31 for 21 Blog Challenge!

In under two hours, we are having a Halloween Party.  My house is a disaster, food is half made, my costume needs serious ironing…

I adore blogging.  Writing is wonderfully cathartic for me and my family and friends seem to like hearing about my crazy family.  But I have to live away from the computer screen sometimes.  Like this time.

You’ll get your Speech lesson tomorrow.  For now, I’ve got some serious housekeeping to take care of.  🙂

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My new friends

I have spent my afternoon trying to infiltrate the Down syndrome community.  There is no secret password, no special knock.  It’s not a closed community, nor is it unfriendly or unwelcoming.  But it is foreign to me.  The vocabulary is new, the discussions, different.  It’s full of love, laughter, frustration, hope, and it is somewhere that I now belong.  I’m just not sure how. 

We have previously been contacted by Ann, one of the family support coordinators from NADS (National Association of Down Syndrome… go ahead, chuckle at the acronym.  We always do!).  She has called me a few times and each time, I told her I was still processing and not sure what to talk to her about or what we would need as a family.  A few days ago, I had decided that I was ready, that it was time to reach out to other people who are navigating through this experience as we are.  So I put “email Ann” on my list of things to do… at the bottom… and then I never got around to it.  Putting it off?  Still not sure what to say?  Just very busy?  I’m not sure.

Today, out of the blue, she called me!  Thank you, God!  She sent me lots of information about parent groups and other activities to consider.  We have lots of support from family and friends… but sometimes it can feel like I’m on an island, trying to navigate the challenges of Tessa’s world!  The ball is in our court now.

Sometimes, I feel a little “late to the party” when it comes to Down syndrome, or maybe just like an outsider still.  I have been looking through and following blogs started by families with little boys and girls like Tessa… families who are farther on their journey than we are, or who had a prenatal diagnosis and “know more” before their babies are born than we know two months into Tessa’s life.  I have shied away from online communities because of the drama and weird “trolls”, but I’ve found a home reading the stories of those few that I have encountered in the blogging world.  And soon, we will venture out to a Bowl-A-Thon or a conference or a playgroup and I’ll start to feel more like I am a part of our new community.  Soon.

 

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