I had the distinct privilege last week to speak to my friend Tara (Hi, Tara!) and her company. They are celebrating Down syndrome awareness month, and nothing makes me happier than to hear people are celebrating Down syndrome! As I was putting together my thoughts, I wondered if anyone would ask questions. I know exactly how it is to have someone come speak, especially in a professional setting. Sometimes it can feel like –OK, lady, I sat and listened to your spiel, now just let me get on with my day. Much to my surprise and pleasure, we had a productive and positive dialogue. I am always happy to share our story, but I completely understand that it can still be intimidating to ask honest questions at the end of the day.
So it got me thinking about some questions that maybe I would have if I was on the other side of this. It’s always my goal to be honest to the point of vulnerability, so I thought of a few things that have crossed my mind and maybe yours, too.
What are your hopes for Regan’s future?
My biggest hope for her is inclusion. I know the power that a support system can give you, and there’s something to be said for having a solid group of friends. I hope that wherever she ends up, she find friends and keeps friends easily. I hope that these friends push her to keep up, help her in areas where she struggles, and afford her the opportunity to just be a kid growing up. I have other hopes for her, too. I hope she gets a college experience of some sort (there are a lot more these days!). I hope she experiences a romantic relationship at some point in her life, and I hope she grows up knowing and loving her siblings. I hope she lives a life with limited medical issues, in fact let’s just make that limited issues in general.
What are your fears for Regan’s future?
My fears are almost the exact opposite of my dreams. I fear that she’s growing up in a world that favors hate and fear over love (though the Down syndrome community makes me feel so good about the world!). I fear that she will feel different from everyone else. I hope that she knows these differences in her are beautiful and exactly what make her the wonderful person she is. I fear she won’t know success in her life. I fear for her living a life alone. I fear her siblings will see her as a burden. I fear for those who won’t treat her with love and kindness.
How has this affected your family / future family?
In so many ways, my answer to this is “not at all”. Though Regan’s diagnosis completely rocked our world, it’s now rockin’ our world in a totally new, awesome way. It has not changed our decision about how many children to have in either direction. Thought I think we can all agree, our “control” over this is somewhat limited anyways!
Did you ever feel responsible for Regan’s diagnosis?
Oddly, no. But also yes! I never had a moment of “why us” or “why is this happening to us”, although I completely understand when other families work through these emotions. I feel responsible for her, but I don’t feel like it’s anyone’s “fault” that this “happened to her”. I feel more that this is so much a part of who she is, and now so much a part of our family that I wouldn’t trade it for the world.
Would you take away her Down syndrome if you could?
Along the same lines as the above, I would not change her diagnosis. I always say the only thing I would wish to change is any hurt she experiences because of her diagnosis. Also, I would probably change her heart condition – because let’s be real, no baby should have to go through all of that.