Monday, October 30, 2017

Life Is Better With You

October is Down Syndrome Awareness Month!  What a perfect occasion to delve into one of my favorite new campaigns, the #LifeIsBetterWithYou hashtag.   For those of you who aren't familiar with social media and its corresponding buzz words, we'll start at the very beginning: What is a hashtag?

  1. (on social media sites such as Twitter) a word or phrase preceded by a hash or pound sign (#) and used to identify messages on a specific topic.
    "spammers often broadcast tweets with popular hashtags even if the tweet has nothing to do with them"
    • the hash or pound sign (#).
      "Hunt mistook an @ for a hashtag while tweeting derogatory thoughts about him"

  2. I think of a hashtag as an online filing system.  For example, "We'll file this one under #WhyIHateMondays."  Then every time someone posts something to social media using that hashtag, it is all together in one file.  If you click on it, you see every post on that subject matter.

On to the topic at hand...In August, CBS News did a piece on how Down syndrome is close to being eradicated in Iceland.  You can read/watch it HERE.  Without getting religious/moral/political, the story just outlines how genetic testing and "heavy-handed genetic counseling" are steering women who are pregnant with babies with Down syndrome in Iceland towards a nearly 100% termination rate.
Enter the #LifeIsBetterWithYou hashtag.  The Down syndrome community has united under this hashtag to offer our experienced insight on the topic, and the conclusion is just that: life is better with Josie.  Life is better with Leanne.  If given a choice, we would chose life WITH them. 
As mentioned before, this campaign isn't about religion or politics.  It's not about being preachy or judgmental, it's about offering pregnant women honest input from people who have experienced Down syndrome first-hand.  
On Instagram, I post pictures like these and use the hashtag #LifeIsBetterWithyou.  What's going on in these photos?  Nothing much.  Just an ordinary family living a pretty ordinary life.  We read books at bedtime, go to school and to soccer games, we dine together as a family, we run errands...having a family member with Down syndrome doesn't bring everything to a screeching halt.  It doesn't make us social outcasts.  
But what about the fears?  What about the statistics?  The heart defects?  The learning delays?  
This blog has been going strong for seven years now and I've openly addressed Josie's heart surgery.  I've addressed how it has taken her longer to achieve her milestones and what we have done to support her in the process.  We're still living our ordinary family life.
But what about the suffering?  The burden?
No child should have to be sick nor suffer.  But each time that Josie has been hospitalized, she's been surrounded by other sick kids; the vast majority of whom do NOT have Down syndrome.  And with the modern medical resources available to us, Josie has managed to persevere through her medical challenges as quickly and as painlessly as possible.  On a day-to-day basis, she wakes up in the morning, eats breakfast, and goes to school, without an inkling of suffering.
As for the "burden," please reference this post, "And People Think Having a Kid with Down syndrome is Hard."  Here's a newsflash for everyone who has not yet experienced parenthood: having a kid is hard.  Period.  Any kid; extra chromosome notwithstanding.  Parenthood isn't for the weak or the selfish.  It will challenge every fiber of your being.  But it's totally, completely, 100% worth it.
Sure, they're cute when they're kids.  But they grow upThen what?
Adults with Down syndrome are even more fun!  Leanne is a strong, smart, kind, and funny woman who is a joy to be around.  She works, she takes care of herself, she has an active social life, and she helps around the house.  
But what about the siblings?  How will it impact them?

Leanne is the sweetest sister and the absolute best aunt to my children.  Leanne inspired us to adopt Josie.  Growing up, Down syndrome was present every single day: in the bedroom next to mine, at the dinner table, on family vacations...When I became an adult and embraced the idea of parenthood, I couldn't imagine that journey without Down syndrome.  Leanne enriched my life in so many ways and she continues to do so.  I learned so much from her.  She had a profound impact on me.  She made me a better person.  That's how Down syndrome impacts siblings.  That's why I know that Merryn and Lydia are blessed to have Josie as a sister.  
To Leanne and Josie, life is better with you!  Thank you for enriching our lives.

1 comment:

  1. Perfect post. Thank you for sharing your experience. The world need it.