Monday, October 1, 2012

{31 for 21}: Welcome and Hope.

Last year, I participated in 31 for 21.  The name indicates 31 blog posts (one for each day in October) for Trisomy 21 (more commonly known as Down syndrome).

Last year, we were in recovery mode from open heart surgery.  We were just beginning to take Ellie out in public again, and I was not teaching because I was taking care of her various needs and appointments.

This year, Ellie and I are both busy with her therapies, etc, but now they happen after my school day.  Oh, and she's much more mobile.  

31 for 21 is a huge challenge this year, so I've enlisted the help of a few friends.  You'll see them responding from time to time in a series called "Faith and Down syndrome."  I've included friends from faiths other than my own, because I often wondered how people with a different framework process the news that their child has Down syndrome.  You'll be hearing from those friends soon. 

In the meantime, sit back, grab a cup of coffee and something pumpkin-y, and settle into what will hopefully be the first of 31 posts this month.

I first encountered 31 for 21 in the year 2010, less than two months after receiving Ellie's diagnosis.  Seeing photos of beautiful children with Down syndrome, especially the little girls, gave me hope.  Deep down, however, I was still terrified.  My profession prepared me for the special education process and to educate a child with learning differences, but not to raise a child with an intellectual disability.

A month before my first 31 for 21 reading, we learned that Ellie's heart wasn't forming quite right, and that she would require open heart surgery.  Nothing could prepare me for that bit of news.

Recently, Ellie's heart surgery somehow came up in conversation about Fall Festivals.  Her scar is fading.  She's a tough kid.  Her extra chromosome continues to impact her life, with low muscle tone delaying most milestones.  Learning for Ellie looks different, but she's doing it.  She's learning.

Down syndrome isn't scary anymore.

Down syndrome can still be intimidating, but it's not scary.  Meeting Ellie's medical, developmental, social, and financial needs might not be easy, but it's certainly not frightening.

Come along for 31 for 21.  You might learn something about Down syndrome.  You will certainly see cute photos and videos of Ellie.  I will also be introducing you to some of the other mamas I've encountered along this journey, for whom I am endlessly grateful.

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