Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Thursday, January 31, 2013

Optimism vs Reality

In the Down syndrome community especially, when you hear a story about a person with Down syndrome you hear about all the great, wonderful, lofty and amazing accomplishments that people with Down syndrome can have. Who doesn't love a feel-good story? I know I do. It gives me great hope for Lauren's future. And optimism is a wonderful thing.

But the reality is that not all of "our kids" will graduate from high school at 18 with a diploma. Not all of them will go to college. Heck, not even all of them will be able to remain in a "typical" classroom forever. Might not learn to read past a certain grade level. May never live independently. Nevermind about potty training, walking, learning to ride a bike.

But you know what? That's okay.

It's really scary as a parent of a kid with special needs to realize that they very well may be dependent on you for their entire life. It's not what the majority of parents plan for when they think of retirement.

But it's a reality that I think is glossed over a lot of the time. Having kid with Down syndrome, or any other disability, is not always rainbows and butterflies. Sometimes when I think about what will happen when I'm 80 and Lauren is 55 my soul freezes and my heart sinks. It's tough to think about. Or maybe we'll just both have dementia and room together at the local nursing home. Lord help the nurse that has to care for my lazy ass, much less the incredibly stubborn Lauren Hope.

My point is that who the heck knows what the future holds. We're not even guaranteed tomorrow so why am I wasting time worrying about 50 plus years in the future?

As parents in the Down syndrome community- message boards, blogs, in person- we need to rally together and love every family. Accept every family. Envelop every family into the fold of amazing support and encouragement. We can't afford to push families away because we're afraid our kid might end up like theirs. And they can't afford it either. You never know if you'll end up being one of "those" families.

I don't mean for this post to be a depressing or to discourage anyone. It's merely a reminder that we are all in the same boat.

"It's not what we do that matters but how much love we put into it that makes a difference." Mother Theresa


  1. Wow!These are the words that my family and friends refuse to hear me say. And this is exactly why we need to work together as families with down syndrome. Sometimes I feel like my family makes things worse by their refusal to hear my real concerns and wanting to make my sweet little baby to be just like everyone else. But she not she is very special so special she has a different DNA set up, so I want to embrace her at what ever level she reaches in this world. Thank you for this post, it was unexpected; but much needed.

  2. I am thrilled with the positive feedback! I was not expecting it at all. It's something I feel very strongly about and I hope I portray to families we meet in the future.