The day we received the news that Ellie has Down syndrome broke my heart. But in spite of our shock and worry, we found hope.
The situation for Ellie and other individuals with Down syndrome is improving. We are not yet at a point of equality, but the parents before me have paved the path to make Ellie's life a bit easier. My hope is that parents receiving a new diagnosis, especially a new prenatal diagnosis, will find hope and promise in our community. I know I did.
My daughter receives specialized medical care and early intervention services. She has the legal right to a "free and appropriate public education." She has role models and friends with Down syndrome. I have parent groups, both locally and online.
I've been lucky to surround myself with parents who recognize that people with Down syndrome have value. Baby Max lived for only 16 days, and his life has impacted our community deeply. His mama continues to be a voice for babies with Down syndrome. I know that Max's story has already helped new parents-to-be when they struggle with their diagnosis.
Sadly, in the past month, a settlement of $2.9 million was awarded to a couple who were mistakenly told that their child would not have Down syndrome. I wasn't in the courtroom, and I don't know the details. I do know that the deepest tragedy will come the day that the little girl with Down syndrome learns that her parents consider her life a mistake. I hope the court decision will not cause prejudice against those with developmental disabilities, and that no one will look at Ellie, Max, or any other child with Down syndrome as a mistake. Regardless of the length of their lives or they amount of support they need, people with Down syndrome are people with the full range of emotions.
Max's mom said it best, "It makes me sad to think that some people look at his life as simply a tragedy. Yes, it is a tragedy that he died, but how beautiful and meaningful that he LIVED."
On March 21, we honor and remember all of the members of our community who have Down syndrome. And since we're celebrating World Down Syndrome Day, and I want to share some snippets from all over the world. These are articles and stories I've collected over the past year and a half. Some will fill you with hope. Others will make you weep, then desire to take action.
Barbados: A mom shares her story of a surprise diagnosis and changing the stigma associated with Down syndrome.
Kansas City: A news clip titled "Down Syndrome Doesn't End Dreams." The clip made me smile.
Eastern Europe: In parts of the world, children with Down syndrome are left to die in mental institutions. Verity is a little girl born in the United States. She has Down syndrome. Katie is her sister. Katie was recently adopted at the age of nine from Eastern Europe. Katie has Down syndrome, too. There's about a seven year age difference between the girls. The photos in this post were taken not long after Katie arrived home. She and Verity are the same length in these photos. Katie's survival has been nothing short of a miracle, and she is growing and becoming more healthy now that she is with her family. Not all orphanages are this bad, but this post gives you a taste of what Katie's family has seen.
Elsewhere in Eastern Europe: Kelly and Kyle are there now. Charlotte comes home on Saturday with her forever family.
United Kingdom: I know, I know, I share this one a lot. But this man gave me a lot of hope during my pregnancy.
Everywhere Else: I'll go ahead and let other Down syndrome bloggers speak for themselves and their families. Over the past year and a half, I've encountered tons of blogs about individuals with Down syndrome. This blog hop is an opportunity for those bloggers to share, to introduce themselves, and for all of us to read a few new blogs and learn what they have to offer.
Join us by linking up below. The rules are simple. Please link back to one of the host blogs in your blog post. (You're at My Stubborn Miss and my friend Meriah at With a Little Moxie is my co-host.) Make sure you enter the link for your POST, not your home page, or else we may miss what you wrote for Wold Down Syndrome Day. And please, do take the time to visit some other blogs and comment.
Thanks for sharing with us for World Down Syndrome Day! Here's the code if you want to add your own logo!