Lilly's been my girl for 5 years now. When she came into this world, I didn't know what to expect. I knew hazily what Down syndrome was. I also knew what little Gembecki girls are like. I think we made a conscious decision to let Lilly just be herself, no matter what that meant, and to nourish her soul and build her confidence and be guided by God and pure instincts and give her all the love in the world.
Turned out to be a good plan. She is incredible.
We're not amazing parents. We make our mistakes, we lose patience, we often times have no idea what we're doing. Lilly probably doesn't eat enough vegetables, and some people wouldn't think it's bragworthy that Lilly has "Dirty Dancing" memorized, or a pillow with Zac Efron on it. But we've also made tons of good choices as well. We've built our own confidence in what the best decisions are for her and our family.
We have taken the road less traveled, in many ways. Ridiculous amounts of schooling (along with ridiculous student loans), and intense jobs. Interfaith marriage. Moving too frequently, to such diverse places, all far from family and friends. Being blessed with a child with Down syndrome.
Lilly took this picture of herself with her camera. She is quite the photographer.
Some of what comes with taking different paths is the freedom of independence. When Lilly was born, I didn't know how to be a mom in general - she was my first - and I also didn't know what it was like to have a child with quote "special needs." Turns out, Lilly's needs aren't very special at all, but we still gave ourselves the ability to do whatever we wanted with this parenthood thing. We gave her every opportunity and no judgments. We saw what she liked, and encouraged her. I never imagined taking a 4 year old to Broadway or a 5 year old to Europe, but somehow it just fit into our plan. (Meanwhile, we cut back on restaurants, haircuts, and new clothes to accommodate those "needs.")
I never took "no" for an answer. I never took someone else's opinion for the truth. I heard John Locke's character on Lost repeatedly say "Don't tell me what I can't do" and that became my mantra. Prove them wrong, Lilly. Prove them wrong, Lilly's mommy.
Lilly can't do everything in the world. No child can. But she has two parents who have the highest level of faith in her imaginable and that has taken her far. She is such a hard worker, a negotiator, an independent thinker. What she lacks in one area, she makes up for in excelling in another. Somewhere inside her she has the secret to success, and we should listen. She is my greatest teacher.
6 years ago, pregnant, I was scared of this child. No one I knew had anything positive to say. And, no one I knew had any experience with a child like Lilly, either. Ironic.
There was a point in the pregnancy when she started dancing in my belly. Silly, funny, I fell in love with all her moves. This child isn't bad, I thought. She's not negative, she's a tiny bit of joy in my belly - she is my future and my future looks bright with her in it. Not a mistake, not an accident, but a tremendous gift.
I've spent the past 5 and a half years loving her so completely. Do I ever worry about anything, have concerns? Yes. But is every single day still like waking up to Christmas morning? Absolutely. I still get so frustrated thinking of other moms in my position who aren't given better guidance and hope for their children. Moms who are given a tiny bit of negative misinformation, and vaguely told to make the best of it, or terminate their pregnancy.
What about love? Support? Faith? Real information coming from actual knowledge and experience?
I spent a pregnancy with so many fears for my child. I haven't spent a day - not a single minute - of her life actually thinking anything negative about her. She's just a kid to me, full of so much beauty and potential. Each day is a gift, with my little gift.
I watch my little girl float around the house with such confidence in herself. I see her learn new things - putting together more complicated puzzles, cooking tons of Christmas cookies (very independently), singing karaoke, modeling new clothes and asking me to take pictures of her. She is happy, well adjusted, has diverse interests. We are proud parents.
Each step of this journey, I didn't know what the next phase would hold. Each time we moved, each year she got older, would it get hard? But it hasn't. Lilly is still the little bit of joy that danced around in my belly, years ago. The biggest difference between the mommy I started as, and the mommy I am today, is that at the beginning I had blind faith - that everything would be ok - because it had to be. Now, I have a more certain faith, based on a very precious little girl, who has proven that she will be just fine. And amazing.