Eyes Like Sapphires

Life with Down Syndrome

Category: Down Syndrome Awareness Month 2018

Down Syndrome Awareness Month: Day 3

“She Downs?…Well, seems like she can get on almost like normal.” This from a dad at the soccer field a couple of weeks ago. I could only laugh nervously and say “Yes, she has Down syndrome ” and “Yeah she does well.” Imagine for a second that someone expressed surprise – to your face – that your child was almost normal…! Part of me is just proud of myself that I didn’t totally lose my shit on him. But I’m also disappointed that I was so taken aback that I missed an opportunity to properly advocate for my girl.

If I had my wits about me this is what I would’ve told him: “She is not Downs or even Down syndrome. She has Down syndrome. She is so much more than just her diagnosis. And she is not normal she is EXTRAORDINARY and I bet she blows your definition of normal right out of the water.” But I’m not too worried I didn’t say that because Frankie will show him soon enough ❤

Down Syndrome Awareness Month: Day 2

The other day Tristan and I were talking about Frankie having a family of her own. I told him she might not. But he was insisting, in the way that he does, that she could. Knowing that he was not understanding the bigger picture, I blurted out “Tristan, sometimes people with Down syndrome are not able to live on their own and take care of themselves.” To which he replied: “Mom, I am more than willing to live with this little girl when we grow up.” Cue the tears…!

Of course this has crossed my mind. Who will take care of Frankie when Seb or I are not able to? I have thought for a long time that that is not something I would want to ask Tristan to do. I want him to be able to live a life that is full and meaningful to him as much as I want that for her. I know we must do our best to provide and plan for her adulthood so she is not a burden to him. I would hate to think that his choices in life – whether they be career or family oriented – would be dictated by having to care for a sibling. Shamefully, I worry that potential partners might be scared off by a man who comes as a package deal with his disabled sister.

I hate to admit that, but that’s the reality. My silver lining? He is becoming such an exemplary human being just by loving her, that I know his path through life will include her and I’m positive that the person he chooses to give his heart  to will be the type of person who welcomes her with open arms, too.

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