Saturday, March 15, 2014

WDSD Countdown: What is it Like to Raise a Child with Down Syndrome?

World Down Syndrome Day is Friday, March 21 (3/21 or 21/3, depending on where you live), chosen for the three copies of the twenty-first chromosome which causes Down syndrome to occur.  This week, I'll post several answers to questions I regularly hear from moms with a new diagnosis.  

What is it like to raise a child with Down syndrome?

I can only answer for Ellie, and she's only three.  I won't sugarcoat or add rainbows where there are none to be had, but we have a lot of laughs around here.

Some things are hard.
Open heart surgery.  NICU.  Watching Ellie work hard and get frustrated.  Worries about her future.  The fact that she doesn't sleep in, ever.  The rare but stinging awful comment from a stranger.  Crayon art on the walls.  And the carpet.  Paperwork for various organizations and doctors.

Some things are amazing.
Ellie started school at age two, with the county, on the bus.  Deep connections both in person and online.  Opportunities just for her with various Down syndrome groups and heart groups.  Options for special recreational classes.

Most things are life.
School and work and gymnastics and church and running.  Playdates.  Reading the latest Honest Toddler post with my husband and laughing way too hard because this is our life. A little girl who insists on wearing all pink.

Here's a day in my life, as the parent of a child with Down syndrome.

I wake up early.  Way too freakin' early, usually because Ellie is up before my alarm.  One of us tries to get her to go back to sleep.  We tell her it is still dark.  We tell her it is still nighttime.  We often fail to sell her on the idea of more sleep.

About half the time, I go run and Matt takes her.  Whoever has Ellie gets her breakfast.  She takes reflux medicine and insists on Cheerios.  I rush to shower and get out the door for work.

While at work, sometimes I see Ellie because I am a teacher.  Usually she just waves.  Sometimes I get a hug.  I think she believes all of her friends' mommies are at school with the big kids.  I am there.  Our neighbor is also a colleague, so he is there.  My friends are there.  She never seems surprised or thrown off.

After work, I pick Ellie up at her caregiver's home.  Her caregiver has two little girls with Down syndrome, too.  We chat and Ellie and I come home to make dinner, go to the store, or do whatever it is we do after school.  We might meet up with my friends on a Friday.  We might play outside.  Sometimes she gets to watch a movie so Mommy can write lesson plans.  Sometimes we draw or use stickers.

Playing outside, and delighted with herself for stealing our neighbor's ride on toy.

Occasionally, we have a doctor visit.  Ellie is followed by doctors for: genetics, GI, cardiology, vision, audiology, and her ped.  Most of those are annual visits.  We recently had cardiology.  She told the tech giving her an echo to "Stop! I watching Dora," when he blocked her view of the screen that was supposed to be helping her sit still.  She also told him that the gel was "Yucky.  Ellie take a bath."

We try to eat family dinner depending on what time everyone gets home.  We put Ellie to bed.  We laugh.  We are tired, with two working parents raising a rambunctious toddler.

Where does Down syndrome matter in our day?  Down syndrome is why Ellie is in school.  And impacts a lot of things about her.  But in a lot of respects, Down syndrome matters in the background only.

A day in my life looks a lot like a day in my life did before we had Ellie, but with the major addition of a child.

PS. We have a giveaway winner!
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  1. Oh little chic, you are a hoot! "Stop! watching Dora" "Yucky, Ellie take a bath". Girlfriend is full of sass. Love that girl. She is getting so big. Megan, I love how you do the nitty gritty--the good, the bad, the life-to-life.

  2. I love the pink outfit where she is wearing the tutu and boots!


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