I don’t want this post to come off the wrong way. We all love our friends and family. They have surrounded us with love and support, and we are grateful. But sometimes, even the most well meaning comment can hurt someone. This month is about educating and advocating, and that is why I am posting this. I opened a group discussion in my DSDN Mom group. I wanted to know what well meaning comments moms were hearing. I decided to share them below.
She doesn’t look Downs. Are you sure?
So, number one, it isn’t Downs. It’s never plural. It is always Down. It’s named after Dr. Langdon Down, the physician who first described its features in 1866. Number two, she isn’t downs or a downie. She is a child with Down syndrome. We use people first language. I will have more on that in another post this month. And finally, the features of Down syndrome become more obvious over time. Just because a newborn doesn’t exhibit those features prominently doesn’t mean they won’t reveal themselves eventually. And p.s. I think most of those features are pretty darn adorable.
Comedian Rob Snow put it best with his response to this comment, “I’m not sure what you mean. Would you mind describing what you think “downs” looks like? I think once you get to your second or third description you’ll realize what a mistake it was to say that to me.” Or my personal favorite comeback, “She must not have it today.”
God doesn’t give you more than you can handle.
Do me a favor. Picture one of the worst moments of your life, then imagine someone saying this to you. How do you feel? Did it bring you comfort? It doesn’t bring me comfort. In fact, it made me pretty pissed off at God. I thought he had given me way more than I could handle. When I was in the emotional trenches, what helped me the most was hearing people validate my feelings and telling me that my disappointment was allowed. I am sorry you are struggling and this doesn’t seem fair, but you are strong and you will fight for this baby. My in laws frequently said to me, “If anyone can do this, you can.” Sentiments like that gave me the will power to forge on. Those are the words that help.
God only gives special children to special people.
While I appreciate the sentiment here, because Sienna is certainly special, you are implying that typically developing children are not special. You are also assuming that I will get some comfort from God’s role in this process. When Sienna first arrived and people said this to me, it didn’t help. I was so angry at God. I kept trying to figure out why he was punishing me.
I don’t know how you do it.
Stop. Just stop. How do you do it? How do we all do it? We are mothers. We love our children. We get up every day and do what we have to do. I have no secret recipe for being a mom. My biggest piece of mom advice is to seek out advice from other moms. That’s where all of my best information comes from. I am in awe of single moms, working moms, stay at home moms, part time working moms, special needs moms, and all moms busting their asses to provide the best possible life for their kids. Who rules the world? Moms.
Didn’t you do the genetics screening?
This one really hurts. First of all, maybe I did and maybe I decided to keep this perfectly healthy baby who happens to have Down syndrome. In my case, I didn’t do the genetics screening. Whenever someone made this comment to me, I felt the need to justify my reasoning for not doing the screening. I usually would make the person feel uncomfortable by saying, “Well, not that it’s any of your business, but I had 4 miscarriages and I knew that I would never risk anything with an amnio. The screenings are just odds. The actual tests are invasive and can cause miscarriage. For the record, we had 7 ultrasounds and not one showed any abnormalities, including Sienna’s heart defect. I know many women who did all of the testing, even the NIPT test, and still went on to have a birth diagnosis. It happens. Don’t assume things and don’t open up this dialogue unless you want to get really personal. People I barely knew said this to me.
I am ending all my blog posts during Down syndrome Awareness month with quotes from great women.
“Every now and then it helps to be a little deaf…That advice has stood me in good stead. Not simply in dealing with my marriage, but in dealing with my colleagues.” -Ruth Bader Ginsburg