Down syndrome, inclusion, Ivy Joy, prenatal diagnosis, the lucky few, tribe

Down Syndrome Awareness Month… Why?

I’ve been wanting to write this post for awhile, but as is usual for me, I struggled putting words to my thoughts! Part of why I struggle to write, is that there are so many ways my brain wants to go and I have trouble figuring out how to organize it all! Please bear with me as I attempt to do so!

If you follow me on Facebook or Instagram, you’ve seen my posts with facts about Down syndrome for Down Syndrome Awareness Month. I’ve been thinking a lot about why there is a Ds awareness month. I’ve also been thinking about why I never knew it existed.

One of the most astonishing things that I learned after Ivy’s diagnosis is just how many babies with confirmed or suspected Trisomy 21 are aborted in the world. In the United States, the percentage is estimated at somewhere between 60% and 70%. There are many countries striving to ‘cure’ or ‘eliminate’ Down syndrome all together.

Scientists have made huge gains in prenatal genetic testing. Doctors can now tell early on in a pregnancy whether a child will be born with any chromosomal abnormalities. I am absolutely not against genetic testing in itself. In fact, we received Ivy’s diagnosis prenatally because we decided to do an amniocentesis.

The problem is that many parents are choosing to terminate their pregnancies based on these results. The way prenatal diagnoses are shared has an enormous impact on parents’ feelings and attitudes about their child’s life. Too many doctors are giving the news with an “I’m sorry” attached and sharing outdated information with pregnant mothers. They are told a list of things their child will struggle with and will ‘never do’. Parents are often pressured to abort because they are told their child’s life isn’t worth living. Though I didn’t experience any of this firsthand, I have heard enough accounts from moms in my Facebook Down syndrome pregnancy and birth groups to know that negative prenatal diagnoses are all too common.

Though I had an overall positive experience with the doctors who informed me of first the possibility that Ivy might have Down syndrome and then the official diagnosis, I was very unaware of the Down syndrome community and the amazing possibilities for Ivy’s life. My immediate thoughts were that she would live with us forever (and maybe she will!) and never have the chance to go to college, have a job, or get married. The future of a child with special needs (or what imagined was a lack thereof) terrified me the most.

As I’ve become a very welcomed part of this tribe of families touched by Down syndrome and moms who are changing the narrative by shouting the worth of their children and making things possible for people with Down syndrome, I’ve found myself in awe of all that is truly possible for Ivy. If you haven’t already, check out the nonprofit organization Ruby’s Rainbow. Liz is the mother of Ruby, a seven year old with Down syndrome. She began this organization because she wanted to help people with Down syndrome pursue post-secondary education. She also wanted to show the world how capable and amazing people with Down syndrome are. Watching the videos of the ‘rockin’ recipients’ being given their scholarships and reading about what they are now doing with their lives has touched my heart and made me ugly cry several times! There is SO much possibility for my amazing chromosomally enhanced little girl!

So this, I’ve realized, is why there is a Down syndrome awareness month. This is why I have shared my story and will continue to shout the worth of Ivy and every person who is differently abled. The world is far too unaware of what Down syndrome truly is, and how amazing life can be with a child who has Down syndrome. Maybe if it is shared more, by people who love somebody rocking an extra chromosome, the termination rate for Down syndrome pregnancies will shrink.

Some of the Instagram moms of children with Down syndrome I follow have been posting video loops where they all answer the same question each week. One of those questions was: “How has having a child with Down syndrome enhanced your life?” As I thought about answering that question, my first thought is: Ivy has enhanced my life in the exact same way her typical brother and sister have. She is my child, and just like with Zoe and Eli, she has made my heart swell with love and pride. She is first and foremost my sweet baby girl! Ivy’s extra chromosome however, has enhanced my life in a way that her brother and sister have not. She has opened my eyes to so many things. Though I consider myself to be pretty compassionate and empathetic to a fault, I was for the most part completely unaware of people who are differently abled, their celebrations and struggles. Of course I knew they existed, but (though it pains me to say) it didn’t directly affect my life, so I didn’t think much it. Being thrust into the role of special needs mom, brought it all crashing around me in the very best way possible. Because oh my word, what amazing things people with special needs offer this world. My heart and my eyes have been opened to see more. In the same way I celebrate Ivy’s accomplishments that she works so hard for, cheer her on through the struggles, and worry about her challenges, I am able to do the same for all children and adults who are differently abled! I hope by sharing Ivy with you, I am able to open your eyes to this amazing world!

Ivy has ignited a passion in me for advocating for both her and all people with different abilities. I want to help this world recognize and make space for all people… peace, love, and inclusion!

 

Check out Ruby’s Rainbow online at http://www.rubysrainbow.org and on Instagram @rubysrainbow

Other awesome Instagram accounts to follow:

@downrightwonderful, @catfishwithketchup, @littlest_warrior, @cedarsstory, @goshoutlove, @specialbooksbyspecialkids, @cucklesandmeatloaf, @angieandruby, @sevymarieart, @theluckyfewofficial

2 thoughts on “Down Syndrome Awareness Month… Why?”

  1. Lindsay, you are a force of nature. I expected nothing less from you as I followed your
    Journey from the other end of Facebook. You are a good person and a super mom that others (including me) can only aspire to be. I expect ivy will change the world with you and your family (and all of your fans) cheering her on. I can’t wait to see that and hope I get to meet her before too long. Love, Noah and Aaron’s mom

    Like

  2. Beautiful Lindsay!. I too didn’t really understand or consider the abilities and the needs and the joys differently abled people because it did not affect my life directly. Thank you for sharing your experiences and your beautiful daughter with our family. I look forward to enjoying many wonderful times with Zoe, Eli and Ivy!. They are all blessed to have you as their mom and I am blessed to have you as my niece!

    Like

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