I have three kids. But I blog and share predominantly about one -- my son, Augie, who has Down syndrome. He is not favored over the others. What you see in my writing, on my blog and on social media, is just a glimpse into our lives. It really doesn't do it justice, but I have to actually LIVE life, not just write about it!
So why do I write and share more about Augie? (Besides the fact that he is adorable.)
Here is the thing... No one said "I'm sorry" when I announced I was pregnant with my other kids. No one cried out of sadness. I don't get a soft and sad, "Oh" when I share about my other two. People stare at Augie. They ask questions like, "Did you know he had Down syndrome prenatally", and then they become silent when I say "Yes, we knew at 14 weeks." I have to wonder the intent behind the question -- did we know? A majority of fetuses with Down Syndrome are aborted. As a mother to a child with the same, this is disheartening.
You may have recently read stories from Iceland and Denmark where they are trying to eradicate Down syndrome. This does not mean they are trying to manipulate genetics. This means they are trying to detect and kill all fetuses that have Down syndrome so that they can be a Down syndrome-free society. It is sickening.
There is a stigma attached to Down syndrome and it is a worldwide problem. According to Webster’s Dictionary, the definition of stigma is, “a mark of disgrace or infamy.” It is a negative perception that causes someone to devalue a person. So much so, that whole countries are deciding that people with Down syndrome are not worthy of life!
This is not only happening in Iceland or Denmark. While there are many positive stories circulating social media about people with Down syndrome, a quick scroll through the comments shows widespread ignorance. Comments like, "This made me smile. But if I knew my girlfriend was pregnant with a Down syndrome baby, I would want her to get an abortion so we didn't have to deal with the problems that the baby would have." Ouch. I try not to read the comments anymore because it just breaks my heart.
I wonder if the negative commenters had a chance to meet my Augie... would it matter? If they actually got to spend time with him, if they got a high five or a sloppy kiss from him, if they got to watch him bear crawl at a super fast pace around the house, or if they could hear his giggle - would that make a difference? If they could see the glimmer in his eyes - would they care? If they listened as I shared my experience as Augie's mom -- managing through complex medical issues, feeding challenges, therapies, doctor's appointments and more -- only to realize my son is the strongest, most resilient boy I know. And that I am stronger than I ever would have thought. That I am a better person now than before -- would this leave an impression?
And, maybe not.
But maybe is good enough for me to share more. To share what life with Down syndrome is really like (for us). To impact, even minimally, outdated and negative perceptions. To show that our life is normal, and happy and good. To show that we take vacations, and go to the zoo, and get ice cream, and go the park, and make memories -- just like all families. That life with Augie is not a burden. It's a blessing.
I share about Augie to help lose the stigma.
Will you help?
** Are you "up-to-date" on what it really means to have Down syndrome, or to raise a child with Down syndrome? You can follow our FB page to learn more: Finding Balance @lissyaileen -- share the good, the hard, and the every day things. Then, if you see something you didn't know, share it so others may also benefit from knowing. If you have a question, please ask.
** We urge you to stand with us in this fight against ignorance. If you hear something negative or outdated in your own circle, or run across something negative or outdated on social media, don't stay silent. Use the opportunity to respectfully speak up. Thank you!