Yo soy La Lay

adventures in family, faith, and Down syndrome

World Down Syndrome Day – A day in the life

on March 19, 2015

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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2 responses to “World Down Syndrome Day – A day in the life

  1. Judy Lay says:

    I love when I sleep over and get to be part of the daily routines at the Lays

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