What I Wish I Would Have Said

For those who follow me on Facebook and IG, you already know that last week my husband and I took a short trip to NYC for World Down Syndrome Day.

Normally I would not venture so far from home while this hugely pregnant, after coming off a month long bout with bronchitis, with a home reno still needing to wrap up at home, a week before my studio violin recital, and with 4 very needly little people at home.

BUT I was invited to speak at the United Nations on behalf of parenting a child with Down syndrome. And one thing that life has taught me thus far is, when an opportunity presents itself to talk at world leaders on a subject very near and dear to your heart, you don’t say no. Making a difference is not always convenient.

And so we loaded up and went.

Papa and Grandma and Aunt Kiki graciously took on the 4 very needy little people (their crowns in heaven grew significantly over the course of two days). We put a pause on the reno. I got a doctor’s note to fly. And the bronchitis had settled into some just congestion and my energy level was up to maybe 70% which was a huge improvement over the past four weeks.

Our flight went smoothly (no airplane baby, YAY!). We discovered that our hotel was an hour taxi ride from the airport (we ain’t in small town Vermont no mo). But they put us up in the gorgeous Roosevelt Hotel, (think dark red, plush carpets and chandeliers galore), which was right downtown in walking distance of the UN, so worth the extra long commute the night before.

(When our plane landed and I was feeling the need to lie down ASAP, we googled the distance to our hotel and cab fare, etc, and the numbers were scary. So Aaron looked up a cheaper way. “I’ve go it!”, he says to his 8 1/2 month pregnant wife at 8pm after an exhausting day of prep and travel while she feels herself slipping back into that sick place the night before her big speech, “If we take a half hour ride on Train #1 and then hike for 6 minutes to Train #2 for a 15 minute ride, and then hike for 10 minutes, and then take Train #3 for another 30 minutes, and then hike for 14 minutes, and then Train #4 for only 5 minutes , and then hike to a bus which after a 45 minute ride will drop us off only FIVE BLOCKS FROM OUR HOTEL!!!!”. Needless to say, one death glare later, we took a taxi.)

The day of the speech we rested as I saved up what little strength I had for the afternoon conference. We discovered several starbucks and Dunkin Donuts within the same block as our hotel (#mindblown #smalltownpeoplelivingthedream) and TWO Chick fil as. (-;

When we finally set off to walk to the UN, it was just under a mile which seemed super doable. Until we realized it was raining. We are not the most prepared people in the world lol. Of course, leaving behind a snow globe in Vermont, rain was the last thing on our radar. So we hiked it through the rain with my sweater pulled up over my hair, hoping that the hair and makeup that I had just gotten all camera ready were not destroyed in the commute.

We arrived and had to wait in a long line of perhaps 50-75 people who were waiting for passes to enter the UN. After a long, cold, damp wait, we finally got our passes and had to pass through about ten layers of security and scanning before we could cross a courtyard to enter the UN.

(p.s. Aaron carried my speaking shoes in his bag while I wore walking shoes for all of this. This affectionately earned him the term “shoe boy”. He rocked this gig. (-;

Everyone was so, so nice and amazing, and I have to say that Karen Gaffney is now my new favorite person in the whole world. She was the speaker that sat next to me, and she was simply amazing. In fact, ignore my speech all together and only listen to hers. You will never view someone with Down syndrome the same again after hearing her gracious, intelligent, well-spoken words.

The video to the event is here: UN World Down Syndrome Day Event (my talk begins around 36:30 but for real. Karen’s is first, listen to hers.)

I could really feel all of the prayers coming my way. God was so kind. I was mega struggling because of the rain exposure making my congestion flare way up (and I cried both during Karen’s speech and when they showed the clip from the brilliantly produced Our Daily Bread video about Addison which did not help), but somehow I made it through. It was a miracle, really. Giving that speech was the easiest part of that entire trip, and I know that had nothing to do with me.

BUT, I do have to say, as pleased as I was with the speech, there was something that I neglected to say, and I can’t stop thinking about it.

By the time the event got rolling, it was a full house! So many chairs and all of them packed full!

At the very end, there was time for questions. One gentlemen asked the question, “How do you stop a woman from aborting a child with Down syndrome?” This is such a complicated question. So many layers to this. As you can hear in the video, Michelle did a great job about talking about meeting and connecting with families who already have a child with Down syndrome. And for some people, this would be SO HELPFUL!

But I wish I would have jumped in and said that in my case, I was given a family’s name, but the thought of meeting them in person was very scary for me. I couldn’t do it. I never once called that number. It took me a lot of time to process this new diagnosis very privately before I was ready to reach out.

And this is why I focus so heavily on advocating through the written word. Because a mom with a new diagnosis, anywhere across the world, might not have access to another family, or feel up to meeting them. BUT, they can read a blog post. Or a book with Down syndrome woven throughout in a way to bring the diagnosis some normalcy. They can learn about day-to-day life without having to commit to an in person meeting.

And I wish I would haven mentioned this in that moment. Because it’s the reason I share our lives. It’s the reason I write books. It’s the reason I worked so, so hard to put my newest book, The End Of The Road (giveaway still open until Thursday!) out there BEFORE this trip.

Because all of us process things differently. And I think there is a HUGE place for written advocacy in terms of stopping the Down syndrome genocide across the world. I think that answer could have been helpful for someone in more of a remote country who doesn’t have access to another Down syndrome family.

You can’t meet up in person? Cool. Google “Down syndrome blogs” Read about real life. There are far more than just mine. Mine is a tiny drop in the bucket. There are many families out there sharing their day to day through written advocacy. I am proud to be part of that group.

And my books? I pray every day that they help not only those considering abortion, but those who tend to tuck Down syndrome into a “bad” corner of their brains even in the Christian circles. So many still need to read and by God’s grace understand all of the “good” that is there. Whether they are next up to receive a diagnosis, or the friend who should say, “CONGRATULATIONS!” to someone else holding brand new Down syndrome news.

So yeah. We are back home. Speech done. Children collected. Trying to clean up the home disaster before baby. Speaking of which, as I hit 36 weeks this week, I guess I should start to get ready for her. Poor girl is coming into a bit of a crazy town around here. But to be fair, #5thchildproblems…… (-;

Thank you for praying for me last week! And thank you for sharing both the speech link AND my new book. My advocacy would mean nothing if you didn’t help spread the word, so THANK YOU. I am supremely grateful for all of you.

xo Deanna

p.s. if you get a chance, please go enter my giveaway!!!!