Welcome to my blog!

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

Saturday, August 3, 2013

Knowledge is power

When we were pregnant with Ryan they saw a bright spot on his heart and mentioned a risk for Down syndrome. We had a fetal echo to get a closer look at his heart and they really didn't see anything, so the concern was gone.

We were terrified. A baby with Down syndrome? What would we do with a baby with Down syndrome? We were incredibly relieved when they told us not to worry. We celebrated. And Ryan is typical.

Fast forward 2 years. We go for our anatomy scan and they saw several markers for Down syndrome. We had an amnio. They confirmed that our baby girl would be born with Down syndrome.

Again, we were terrified. So we pored over every article, read tons of books, starting reading blogs, anything we could do to arm ourselves with knowledge. And you know what? Some of that fear started to dissipate. The more we learned the less scared we were.

Five months after that appointment, Lauren Hope was born. Love replaced terror. Hope replaced anger. We kept learning.

Even now, just 18 months after Lauren was born, I can hardly remember being so scared. Down syndrome? Psh. The heart issues and complications Lauren had gave us a whole new fear. Open heart surgery. On my six week old daughter. Now that is scary.

My knowledge of Down syndrome grows daily. But the knowledge I do have is like a coating of armor against the fear of the unknown. Every day it gets just a little stronger. I used to be so scared of the thought of a child that didn't walk until age two. Now my hope is that she can walk into preschool at age 3. And the majority of the time I'm not even sad about it! I do sometimes fear for the things Lauren won't be able to do. But I'm comforted by knowing all the amazing things she can do.

It is what it is. And I don't mean to sound like I'm merely resigned to the fate of a kid with a disability. I enjoy it. I relish in her accomplishments in a way that just simply would not be if she were typical. Daily celebrations are commonplace in our home.

For me, knowing what to expect takes away so much fear. This is the reason we decided to have an amniocentesis to confirm Lauren's diagnosis at 18 weeks pregnant. Sometimes I can barely believe I consented to such a risky procedure, but knowing replaced the fear for me. The day of Lauren's birth I was afraid that she'd be taken to the NICU right away but I was not afraid of her. This is why I continually try to immerse myself in articles, blogs, books, news stories, etc. relating to the Down syndrome community. This is why I email my state legislation about the ABLE Act.

The knowledge I currently posses is like second nature for me now. And my knowledge grows daily. I often forget that not everybody in the world knows very much about Down syndrome. Instead of getting angry at poor language choices, ignorance and staring, I try to remember that not everyone is as lucky as we are. We don't just wonder about people with Down syndrome. We get to love a person with Down syndrome! 

If you're reading this and you don't have the honor of loving a person with Down syndrome, you can still learn! The best way to learn- ASK! I always prefer questions to staring. I am always more than willing to share my (however limited) knowledge about Down syndrome with people. I do know plenty about Lauren and she's more important anyways :) If you see us in public or on Facebook or read this blog- ask away.

Knowledge is power. 


1 comment:

  1. I just found your blog! Thanks for sharing Lauren with the world. My little one is about to be 12 months, she has DS as well.

    I was in the exact same situation as you when you had your first child. We were told everything looked perfect after they did the echo and said there was nothing to worry about. A few months later, no later than 10 minutes coming out of the O.R we were asked if DS ran in our family. Way to break the ice after having a baby right?!

    I am learning every day, and I wouldn't trade it for anything.

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