The Truth About Down Syndrome

The misconception is that having a child with special needs is hard, or even a burden. I don't know about other special needs or other kids, but raising Lilly has been relatively easy. Sure, it hasn't been a cakewalk moving to New Zealand, moving back to Charlottesville, and moving to New York. Or being a single-parent many nights while my busy husband is working; or juggling my own full time job with daycare. But the reality is that Lilly's needs are not all that special.

Lilly is a child just like any other. Sometimes she's a good eater and sometimes she's picky. Sometimes she loves her bedtime routine and sometimes she's trying to manipulate one more Hannah Montana before shuteye. Sometimes she loves going to school to see her friends and sometimes she'd rather be home with her mommy.

Her quote "special needs" and the way they relate to her daily life are more like the special needs of any child. All parents are trying to teach their kids things; she's learning shapes and letters while other kids are learning to read - is that so special as to be burdensome? She learned to walk a year later than the average kid - but it was nice to have her not-as-mobile for a little longer, and since she was two she's been running nonstop. Lilly had heart surgery 6 months ago but instead of feeling like it was a hardship on our family, we were praying our hearts out that our little girl would mend 100% so she can live to 100 and bless our lives for a long time to come. Her needs, her differences and her similarities, are just a part of who she is, of our daily routines, and we don't think of her as being all that "special." Lilly is just our little girl.

But here is the little known fact: Down syndrome does have its burdens, but not as you'd think. What has been more of the issue is other people and their reactions. For some reason, people want to classify Lilly. They'd like to take her and analyze her and place her as being deficient in some category. The Down syndrome label, for some, seems to take away Lilly's abilities and makes certain people focus on what she can't do. They want Jon and I to be worn out as parents because of how hard the "special needs" make our lives.

It's just not our reality. Our lives are so much fun, and the reason is because of Lilly, not despite Lilly. Our world is bright and colorful in ways I never imagined pre-Lilly.

For typical children, people don't seek out what they can't do; they are more often taken at face value - they have strengths and weaknesses and mostly are just "kids." Lilly is just Lilly to us, she is not a problem to solve or an issue to analyze. Our hope is that the world will look at kids with special needs and realize that they are just as unique and normal as any other child.

That is our struggle, our burden, of having a child with Down syndrome. To have others look at our Lilly the way we do. We don't mind fighting this battle; Lilly deserves that basic respect. You don't need to worry about Lilly, she is fine. Now all we need to do is change the world.