Wednesday, March 20, 2013

Happy World Down Syndrome Day (tomorrow), my sisters!

Down syndrome has given me a lot: a lot of understanding, a lot of frustration, a lot of patience, a lot of uncertainty, a lot of appreciation.  But the greatest gift Down syndrome has given me is the other moms of children with Down syndrome that I have met.  They are my sisters.

I have met many moms over the past 4 years that have children with Down syndrome.  I've met moms on line, in grocery stores, at school, and most recently through a mom's group.  And it's an incredible experience to meet another mom, not know anything about her, but once you learn she has a child with Down syndrome, you know a part of her intimately.  We cheer together when that little baby is finally released from a long NICU stay and gets to go home.  We struggle together when we see for the first time in writing, the results of that first round of testing that spells out all those delays.  We celebrate little milestones like finally using a straw or clearing both feet off a floor when our little one learns to jump.

There's the joy when after over 2 years of waiting (2 years and 3 months to be exact), we finally hear the word "mama."  We cry together when we want so desparately, and struggle, to get our child the education and the services and the acceptance they deserve.  We know the guilt we all feel on days when we don't like Down syndrome. 

And we understand the devastation the first time we heard that our child had Down syndrome and the way that devastation gave way to a pure deep unconditional love for our sweet children.

This isn't to say that this sisterhood replaces or even trumps our other friendships.  My best friends that were my best friends before Alexis arrived, remain my best friends.  Those 6 women that I first contacted with the exciting news of my 3rd pregnancy, and then contacted again to tell them of what felt like the most devestating news of Alexis's Down syndrome, will forever be held close to my heart.  And there are plenty of times that the last thing I want to talk about is Down syndrome, and quality time with a friend, talking about everything but Down syndrome, is exactly what I need.

So on 3-21, also known as World Down Syndrome Day (the date, 3-21, is representative of the 3rd copy of the 21st chromosome.  Clever, eh?) I celebrate the sisterhood...these women that I am so grateful to have in my life.  These women who are there to answer questions, to sympathize, to vent to, to celebrate with.  For my new sisters, I am grateful.


  1. My heart is bursting with love for my beautiful daughter who has a gift of putting on paper, her innermost thoughts. What a wonderful testimony you made to our sweet Alexis. How could we possibly love her any more!

  2. Kendra- this is such a beautiful post!!! could not have said it better :) happy world down syndrome day!!!!!