But the words - "Down syndrome" - held me back a little. Not from giving her everything and loving her to pieces and being so damn proud of everything she did - but by not knowing if some of her amazingness was just in my head. Like I might be the only one who appreciated her, exactly as she is. It was as if the day she was born I was given a piece of paper that said: "your child has DS and so she won't be as good as you think" or something like that. There is such a stigma on "DS" - from doctors, from society, from everyone. I mean, 92 percent of mommies who have babies like my precious girl don't even give them the opportunity to be born. What do they know that I don't?
So I simultaneously basked in the amazingness of my girl while tempering it with the possibility that it was all in my head, that first year. Which is sad because a baby doesn't even do much their first year - and already was I almost limiting what she could accomplish?
That first year, we had a sorority girl babysitter who fell in love with Lilly. She gushed over her, had enthusiastic energy. She had a passion for life, and a passion for my girl. She would take Lilly to the sorority house to show her off to the other girls, and I was proud that she was proud of my girl. And she took pictures of Lilly for a photography class - and gave them to me towards the end of that year, and I saw my daughter's beauty in the photographs - not in the way a mommy looks as her precious baby - but as an impartial "this little girl really is beautiful."
And Lilly reached her first birthday, and was hitting all these milestones - even though she was delayed with some - but she was signing and saying words and so smiley and cheeky and funny. And I remember, the day after her first birthday, thinking "Lilly is so smart!" And it hit me - I had never allowed myself to use that word before. Like, her having Down syndrome, her being delayed in some areas, prevented her from being smart. But it didn't.
Jon and I watched the Tony Awards the other night - because living in New York City, we're a little more plugged in to the theater than we used to be - and I heard this acceptance speech by Nikki M. James, who won best actress in a musical:
"There’s a story about bumblebees. Physicists couldn’t figure out how they did it, how they flew. And we all know that they do. We’ve seen them do it. They did it because nobody told them that they couldn’t because of sheer will and determination. I come from a long line of bumblebees … I am so grateful that nobody ever told me I couldn’t do it, that I couldn’t fly."
Lilly is that bumblebee. Trust me, I would love her no matter what her capabilities. But for all my worry that first year about what she couldn't or wouldn't be able to do in her life - she blew me away. No one has ever told her that she couldn't do something, and so she's just done everything - successfully.
And ever since then, I've realized - through all our experiences - how strong Lilly is, how motivated, how determined, how smart and how cheeky and how funny and how capable. Life may not always be fair, but she certainly has found her way time and again to make the best of each situation, navigating her way through the world, and teaching so many lessons along the way.
As I look back 5 years since the day she was born, I am amazed at what she's overcome, and how many proud moments we've had. So many times with happy tears in my eyes. What a beautiful adventure we've had together.