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Dinosaurs are scary. Down Syndrome isn’t.

I stole that title from a friend. It’s true. Unless you’re my 6 year old. And then it’s not, because dinosaurs aren’t scary either. (Unless we are talking about a t-rex. Obviously.)

There are so many times over the past months that I wished I could somehow let other people know what I know. Those parents sitting in a doctor’s office being told their baby has Down Syndrome. The family praying about adoption and wondering if they could really raise a child with special needs. The woman getting an abortion because of a prenatal diagnosis. I wish they knew.

I wish they knew how fun this is.


I wish they knew how normal this is.

I wish they knew how worth it this is.


I wish they knew how easy this is.

Sure, there are parts that are hard, exhausting, heart-breaking. Same with parenting any other child. You learn to parent and care for this child in the way she needs. You learn medical terms you have never heard of and you aren’t intimidated by them at all. You make therapy part of your day to day life and position your child in strength-building ways without even thinking about it. You live in each moment and celebrate small (huge!) victories. You smile a lot and you cry a lot too. You meet people you never would have known and now can’t imagine what you would do without them. You savor each moment of this awesome life. You notice the little things. And it all becomes your new normal. A better normal because this little person is in it. A normal that you wish everyone could experience.

So you see, this is a lot of things, but this is not so scary when you know what I know.

More Alike Than Different?

More alike than different. That’s the theme of a campaign started by the National Down Syndrome Congress several years ago. I like it. It acts as a reminder that people with Down Syndrome are people, not a diagnosis. It points out some of the reasoning behind people-first language (saying “a child with Down Syndrome” NOT “a Down Syndrome child”). I hope it makes people stop and think that maybe the outward appearance of some differences are small and insignificant. Hopefully it makes people realize that if they took two seconds to be observant, they’d see a person that is just like them. More alike, less different. And if they see that, it will be good. They’ll have seen truth. They’ll have seen a person instead of diagnosis. Win.

There is one small thing that bothers me though. The whole thing implies that being different is not good, that being alike is better. I guess that depends what you’re being the same as, but I do know that being different does not equal being wrong, or less than. I also know that a diagnosis of Down Syndrome truly does not make you that much “different” but, if it did, why would we care? Why should that be bad? It’s cliche but true – this world would be pretty boring if we were all the same.

I have five kids. I can tell you that each one of them is vastly different from the next. I can also tell you that my two children with special needs are just as different from each other as the three typical kids. Never have I though, “wow, she’s different because she has Down Syndrome” or “cerebral palsy sure does make her different.” Sounds silly when you say it like that; right? I never even think about my daughter having Down Syndrome. She’s just E. She’s awesome and giggly and has the best facial expressions. She’s cuddly and sweet and loves to be outside. She’s my easiest child, my best sleeper, and in the words of my 5 year old “our most adorable kid”;). So if this is what “different” looks like or if this is what “alike” looks like, I don’t really care. Just give me more. It rocks.

 

The First 6 Months of Forever

Happy 6 months home sweet girl. You have filled our lives with spunk and drama and laughter from the moment you came home. You have filled our hallways with giggles, our laps with cuddles, and our ears with never ending stories of “big monster tractors” and “super duper fast machinas”.  You have soaked our floors, overflowed our sinks and splashed outside to your hearts delight. (Yeah, we think you like water.) You have danced in tutus with your sister at sunset, covered yourself completely in mud with your brother, and sang your heart out in church (one line behind the rest of us, but whatever:)). You have learned the alphabet, can read a few words, and can speak so well we can barely believe you haven’t spoken English all your life. You have conquered the stairs, jumped on trampolines, and don’t blink an eye at our steep driveway. You love all things girly and pink and sparkly and yet can race toy cars and bikes with sound effects that would impress any boy. You hate slowing down and going to bed, but we love every morning when when you wake up with the most cheery “Oh, goooooood morning! Did you have a good sleep???” You’re independant and yet so often we hear “I neeeeeed you mama!” matched with outstretched arms. I could go on forever telling of the wonder and joy and absolute love that has surrounded your first 6 months home, but I’ll just say this:

We love you forever and ever and I don’t know how we ever lived without you. You my dear, are super awesome.

Happy World Down Syndrome Day!

 

Five years ago we sat in the office of a maternal fetal specialist and heard the news that our first child, our little baby boy, most likely had Down Syndrome.

 

 

Five years ago our life changed, our perspective shifted.

 

Also, five years ago (unbeknownst to us) our little Miss Y was born across the ocean.

 

 

Five years ago I gave birth to a little boy who did not have Down Syndrome but had brought us on an unforgettable journey.

 

 

Fast forward a few years.

 

Today, because of that journey, because of Reece’s Rainbow, because of so many amazing people, because our hearts were open to a child with Down Syndrome and then with other special needs, we now have sweet Y. A child once considered un-perfect, damaged, unwanted, is now loved immensely. Funny how five years ago as she was being born across the world, the love that would lead us to her was just being planted in our hearts.

 

 

As if all that were not enough….Today, because of that journey, our hearts and eyes were opened to a little girl we hope to soon have home in our arms. A tiny little bundle of cuteness, likely abandoned at the hospital simply for having an extra chromosome. An adorable child, just a baby, now alone because of something so simple. But, five years ago, before she was born, we started walking toward her. That blows my mind.

 

 

Thank you Lord for this journey.

 

And with all that, I say…..

 

Happy World Down Syndrome Day! Open your eyes today. Open your heart today. You never know where it will take you.

 

I love this video.

I love this video because it educates, because it shows love and because it’s true. But I also hate that it needs to be made, that stating the obvious in necessary. I hate that the statistics say that 90%+ of those who find out prenatally that their baby *might* have Down Syndrome choose to abort that baby. Wow. I hate that those parents don’t know what I know. I got that diagnosis. I sat in that chair. I was told my baby likely had Down Syndrome. But I already knew. I knew about the perfect life God makes. I knew about the chromosomes He chooses. I knew about chance and luck and how it played no part in this. I knew. I wish they knew too. And beyond that, I wish they knew that things that look scary from the outside, are often kind of amazing and wonderful once you get past the fear.
 

March 17, 2014 - 1:49 pm

Susan Hostetler - I love the video too! When my daughter was born I was scared I was not up to the task of raising her. I was, though, and now 8 years later she brings me so much joy. She has rearranged my life in the best way possible. And has also shown me my own strength.

March 17, 2014 - 1:52 pm

Fly Like A Bee - Thanks for sharing Susan! Awesome to hear stories of fear turning into total joy! <3