World Down Syndrome Day

Mar 20, 2014 by     12 Comments    Posted under: Early Literacy

Tomorrow is March 21st. For some, it’s just a Friday. For others, it’s the end of a long week or the beginning of a much-needed weekend. And for a few of us, 3.21 stands for something else entirely.

Two years ago it would have been an ordinary day on the calendar for our family. But that all changed in September 2012 when our son Uriah was born with Down syndrome.  We now join the dedicated group of people wishing to bring awareness to the ever so awesome (though often times not so easy) blessings that come with Trisomy 21 (the most common form of Down syndrome, caused by an extra copy of chromosome number 21).

Photo courtesy of Photography by Angela Gross

When I was 32 weeks along in a totally healthy and awesome-in-every-way pregnancy, we caught a soft-mark for Downs during an ultrasound. Two weeks later, a blood test confirmed our unborn son did have Downs.

The first 72 hours following the diagnosis were tough, to say the least.  It was a time when fear prevailed and emotions were high.

But on the fourth day post-diagnosis, something clicked.  We started having mental breakthroughs, one of which had to do with literacy.  As we were in transition from the reactive state to a proactive mindset (and in this particular case, while brushing our teeth getting ready for work) my husband Nick turned to me and said, “if a typical child needs three stories a day, Uriah will get six.”

He was quoting children’s author Mem Fox! I couldn’t believe it.

 

 

You see, during my first trimester Nick and I both read Mem Fox’s Reading Magic: How Reading Aloud to Children Will Change Their Lives Forever. In her book, Fox encourages families to read three stories a day with their little ones because children need to hear 1000 stories before they can learn to read. Her recipe for developing early literacy skills included one favorite, one familiar and one new book each day. She also encourages families to read not because it’s the right thing to do, but out of simple desire of spending time with a child.

Truth be told, amidst my fear and anxiety, I had lost sight of the fact our son’s basic needs would be the same. He’d still eat, poop, sleep and need to be read to…just like any other child.

This was Nick’s way of saying no matter what it took, our son would be a reader because we would provide him with what he needed. Even if it might take a little longer, or a bit more effort, the sky would remain the limit in all things, especially literacy. And we were gonna rock our son’s world with awesome books and stories!

So the day Uriah was born, we started reading to him. And we’ve been reading every day since.

How do we do it? We open the first page and dig in.

Do we do anything special? Oh yes! We change our voices. We speak clearly and slow our pace if we get too excited. We enjoy the heck out of what we’re reading. Chapter books, board books, picture books, text books, the Patagonia catalog…you name it, we read it aloud.  Uriah gets to turn the pages, which is a very important job.  We laugh at the funny parts, get grossed out at the gruesome scenes and have a stack of books on the shelf screaming “Read me next! Pick me! You want me next!”

In our family’s own way, we make it special.  The exact same way we planned on making it special all along, extra chromosome or not.

So with tomorrow being World Down Syndrome Day, I encourage you to celebrate by simply helping a child (any child) become downright comfortable with books. If there’s one thing I’ve learned in life (especially throughout the last 18 months) it’s that every child needs to be read to. Every child deserves to witness love through the sharing of stories.

And I sincerely hope the child you read to is as snuggly as ours!

For more information about Down Syndrome and World Down Syndrome Day, please visit http://www.worlddownsyndromeday.org/.

12 Comments + Add Comment

  • Love it.

  • Proud of my beautiful family. We adore our stinking adorable grandson that melts hearts and lives and reshapes our world. Life is not an expectation but a journey that excites imagination and restores our faith.

  • I love my grand nephew, Uriah. He is such a beautiful boy. I love my nephew Nick and his beautiful wife. This family is an inspiration to everyone!

  • Uriah was blessed to have been born to such involved and invested parents to love him so much that they read to him so frequently. I have a picture of him with the saying underneath “I am unwilling to concede limitations”. The same can be said of Dara and Nick.

  • I’m so honored to know you Sweet Girl! Your son is so blessed to have you as his mother. And, Uriah’s Dad sounds pretty amazing too. Such Loveliness you’ve brought into our world. God Bless. XOXOXO

  • Dara, You’re a wonderful person and very inspiring to all who meet you. Uriah is one of the most blessed little guys in the world to have parents as awesome as you and Nick. New parents could definitely learn from your little family. Thank you for sharing.

  • Dara this is an amazing article. Having been a pre kindergarten teacher in a previous life I fully understand the importance of reading to children every day. Mem Fox wrote a book I would read to the children’s parents on Open House. I love her work. Uriah us a fortunate little boy indeed! Thank you for sharing your love of literacy. Children love music and stories no matter what their abilities.

  • I am not sure who is luckier Uriah or his fabulous parents!!! thanks for sharing Uriah’s journey with me. Love Rita

  • This is a very special story. I can tell how much you love that little guy. He is so lucky to have such amazing parents. I have no doubts he will love books just as much as his mommy!

  • Dara,Thank you for sharing this story! What a beautiful boy Uriah is and what awesome parents he has. I remember when Nick came with you to read at First Steps during your pregnancy-there was no doubt your family would be lots of fun!

  • What an inspiration! What a precious boy Uriah is! What incredible parents!
    Dara this is just beautiful, inspiring and full of your wonderful energy! Thank you for sharing this for so many. Love, love, love your sweet family.

  • Dara, I’m inspired by your drive and dedication to your beautiful boy! Happy reading!

Got anything to say? Go ahead and leave a comment!

XHTML: You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Bringing Books to Life

Bringing Books to Life helps educators and parents find fun and innovative ways to inspire children to read.

Read about our Preschool Literacy Program

Elizabeth Atack, Program Coordinator
615.862.5773

GROW

Megan Godbey, Adult Literacy Coordinator/GROW facilitator
615.862.5804 x6850

Klem-Mari Cajigas, Bilingual GROW Project Facilitator
615.862.5804 x6851

Books & Literacy Tips