I think it's safe to say that everything I originally thought prior to Lilly's birth is wrong. I was small minded, short sighted, and naive - about Down syndrome, about kids generally, about life. Thank God Lilly changed everything.
I hate the initial information given to new or potential parents of a child with Down syndrome. Genetic counselors, ob's, random friends and family share so many things that are confusing, broad, wrong, outdated, and so many other not-so-helpful things. There were a few things that stand out to me regarding the first time we heard the words Down syndrome when I was 13 weeks pregnant. First, the ob said that she would probably have a heart defect (based on the potential DS diagnosis, not based on anything he saw in the scan), and encouraged us have more tests to basically abort if it was positive for DS (and yes I think that was all in his same sentence). And someone said she'd need glasses. I worried that she would not be independent and wouldn't be able to do things on her own, but - I swear this was one of my initial thoughts - she would be a great traveler so - in my slightly shocked random though, I remember thinking if she can't work and can't live independently, at least she and I can travel the world together someday. I remember wondering if she wouldn't be able to learn - especially learning to read. And that she wouldn't have friends, people wouldn't give her a chance, and it might be lonely for her, and for our family.
Breaking down this list: Lilly did have a small heart defect, but it wasn't a big deal and was fixed in an hour long catheterization procedure. I am so thankful we did not do further testing and amazingly grateful we never considered the option of abortion - but our first doctor was correct when he used the word "positive" and "Down syndrome" in the same sentence, although that's not exactly what he meant. Again - thank God Lilly is exactly who she is. And oddly, she is the only person in our family with perfect vision.
As far as independence, I am shocked at how much street smarts Lilly has. She can figure anything out - literally, anything. I can't say for certain if Lilly will be living on her own as an adult with no help whatsoever, but to be honest I could almost see her doing it as she is now, at age 6. The girl knows her routine, knows where everything is, knows what is right and wrong, knows money and transportation, knows social skills and how to get what she wants and needs. She especially knows how to take care of her brother, and I wouldn't be surprised if it's her taking care of Ben someday, and not the other way around.
And I must have seen into our future, that first day that we heard the word Down syndrome, because Lilly won't just be a great traveler as a grown up - she is the best child traveler that we've ever met. She loves hotels, handles long international flights like a pro, easily gets her way through airports - checking in, security, that last minute bagel on the way to a flight, and appreciates the heck out of every cultural and social experience.
And learning. I am so inspired as I watch her work much harder than her peers need to, to learn the same material - but she makes it look effortless and is keeping up so well with her class. Which means: she is reading. She is writing. She is counting, and counting by 5's and 10's, and telling me about presidents and religion and life. I always thought that reading was so important because it would give her freedom, and the fact that she is so enthusiastic and learning to read so well just makes me so proud of this little girl.
And friends? Ha. Lilly makes and keeps friends so much easier than the rest of us. She is social, likeable, sweet, and funny. It warms my heart to hear everyone at school love her, and the playdate invites are nonstop. Every week I'm not even over exaggerating, she averages probably 3 playdates with different people. Girls, boys, kids in her class, kids in other classes, kids in different grades, everyone wants to hang out with Lilly. And the friends she makes often makes us friends in the parents of her friends, so it has definitely been the opposite of a lonely isolated experience. (And this isn't even talking about the amazing community of families we've met that have children with DS or other special needs.)
Are things always easy? No, but I wouldn't relate that to Down syndrome necessarily - I think being a parent generally is harder than I every pictured it to be - especially the pressure of doing it all and having it all. I am both working and staying at home. I need to volunteer for everything, cook healthy meals, keep the house clean, be responsible for my work which often has tight last minute deadlines, and teach the kids everything they need to be responsible, happy, health, well mannered and well behaved little kids. And sometimes, they have an off day, or sometimes I do. And Jon does help so much, but he's still the primary work-outside-the-house person, and works crazy hours. Things are busy, crazy, but they're so worth it, and I wouldn't change anything about either child: Lilly's extra chromosome and Ben's extra sensitivity. We're all exactly who we're supposed to be. I just wish that - in the initial glimpse of information regarding Down syndrome showed a more clear picture of how beautiful our lives are.