Yo soy La Lay

adventures in family, faith, and Down syndrome

WDSD18

Tessa rocks.

Because of big, happy grins.

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Because of a sweet little nose.

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Because she is stubborn.

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Because she is obsessed with doughnuts.

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Because she is a worthy human.

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Because she is STRONG.

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Because we are better with her.

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Because she has a place in your class, in your school, in your community.

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Because the world needs love like hers.

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Because laughter.

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Because OH MY GOSH THIS SWEET VOICE!

Because of all the little pieces of her that rock.

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Happy World Down Syndrome Day.  We are so thankful that she is ours.

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World Down Syndrome Day – A day in the life

Last year at this time, with my just-barely three-month-old nestled in little bouncy seat beside me, I sat down to write about life with a little one with Down syndrome in celebration of World Down Syndrome Day.  For as much as the children have grown in the past year, so little has changed.

I’ll be honest, this post about what life is like with a child with Down syndrome seems a little silly to me.  I’ve been working on it for a week now, trying to find some spin, something interesting or relevant.  Maybe it’s because she’s young, maybe it’s just because things aren’t really that different… we love our life and wouldn’t change a single, solitary aspect of it, but let’s be honest, it’s not exactly thrilling.

Our mornings still start early… I’m out the door by 5:40.  We can usually hear Tessa starting to stir on the monitor by then, but we let her stay in bed until John is ready to let the chaos begin.  We have also found that Ellie is a lot happier with life when she is woken up by Tessa’s babble rather than Daddy’s insistence that she get moving.  On the weekends, we have breakfast together.  Sundays, I make pancakes.  Otherwise, Ellie mooches John’s oatmeal.

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During the day, my kids go to our daycare provider while John and I work.  Tessa has great motivation to keep up with the kids around her; she so loves (and is loved by) the other children.  A couple of her therapists do her sessions there, otherwise she has them after I get done with school for the day at our house.

I pick the girls up in the afternoon and at home, Ellie watches The Pioneer Woman (every.day.) while Tessa plays and I finish up my work and check in with the mom groups that I am a part of through social media.

(I used to be pretty active in typical “mom” groups.  As of late, that has become… challenging.)

99% of the time, the girls get along great.  Just recently, we’re starting to witness the usual sibling annoyances:

Around 4:30, Tessa makes her way to the garage door, where she sits and signs “Dad” until he walks in the door.  We sit and eat dinner as a family every night.  Ellie is the slowest eater on the planet.  After dinner, there is almost always some kind of dancing.

Occasionally, we get the girls into the bath.  We pretend to fight over who gets to put Ellie to bed while the other feeds Tessa and wrangles her into her pajamas.  By 7:30, both girls are asleep, I’m mostly asleep, and John’s enjoying his quiet time on the couch.

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I would not change a thing.

Every 24 hour period is a blessing.  Every second that we get to spend loving each other is precious.  Our family’s minutes and hours are not much different than yours.  I hope you can see that, feel that, believe that… and include others with Down syndrome in your life right along side us and our little girl.

For more stories, visit adayinthelifewithdownsyndrome.com.

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A Day in the Life – WDSD 3/21/14

For World Down Syndrome Day, the Ds blogging community has been called to tell you all what life is like for us, The Families of a Child With Down Syndrome.  This is hard because in my family, we’re in transition right now (or at least will be very soon).  My maternity leave is slowly but surely coming to a close and I’ll be off to work before this month is over.  My days right now are blissfully unremarkable.  Sure, Tessa has a few extra doctor appointments and we do some therapy here and there, but in reality, the care of my newborn is not unlike the care of Ellie, my “typical” child, when she was first born.

We get up in the morning.  She eats.  I shower, she stares at the ceiling fan (it’s soooo interesting!).  She eats, she pees, she does her exercises we play, she snoozes… and so the day goes on.  After a few cycles of this, sometimes we go to the store.  Sometimes, we put on music and dance around.  Occasionally, she gets a bath.  If her hair doesn’t get combed, she looks like this:

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Later in the day, we get in the car to pick up Ellie.  Our day gets slightly more interesting once Big Sister is in the house.  Suddenly, the world is noisy.  There’s Daniel Tiger on the TV, loud crashes of toys being tossed about the room, the microwave is running, Ellie is talking in a ridiculously high voice, shoving some stuffed animal in Tessa’s face, trying to engage her in play.  When John comes home, there’s some rough-and-tumble play (Tessa just watches, I promise!), dinner, stories, bedtime.  It’s all very uncomplicated.

Once a week, there is some therapy.  The therapists come to our house and do exercises with Tessa.  We do them too, when we play with her.  It’s not work now, just purposeful play.  When Ellie is here, she tries hard to steal the spotlight.  Our PT always brings some special toys for Ellie and that helps.  My house is a lot cleaner than it used to be.

Weekends are busy as they always were.  We go to church, we get together with friends, we leave the kids with a babysitter and go out to a bar or to dinner.

My message, from a new parent to a newer parent, is this:  In the beginning, when you hear that your child has Down syndrome, you stop breathing and think that your world has just turned upside down.  And in some ways, I suppose it has.  But mostly, you just have an infant to care for, one that is mostly like the other infants that you will care for, save for that pesky extra chromosome.  There is some new language, you have some long-term things to think about, but you have time and resources and a community of supporters out there cheering you and your little one on each step of the way.  Your child’s milestones are our milestones, we join you in your worries and doubts, your cheers of joy, your frustrations, your amazing breakthroughs.  To the new parents, we support you, we’re here for you, and we’re proud of you.  Welcome.

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