Monday, March 4, 2013

Trisomy Awareness Month

Trisomy 21 is what Lydia has.  It means that she has an extra 21st chromosome.  It means that there is the possibility of some distinct physical differences for her. It means that she will most likely be delayed in some physical development, but at some point she will be able to achieve those milestones.  It means that there may be some medical issues associated with her chromosome defect.  It means that she has something extra than most people.  It may mean a lot of things to group her into some different categories, stereotypes, high-risk groups.  However, it does not define her, it does not describe her, it does not limit her. 

I have prayed for awhile as to what I wanted to share about to help create some awareness about Trisomy awareness month.  I feel like I need to change people's minds, shake them until they understand what this all really means.  I want to wipe away those bad stereotypes.  However, I realize that I cannot do that.  I am very passionate about creating awareness and breaking down old stereotypes.  I believe the best way that I can do that is to share our story, as I have done.

What a blessing God has given me, not only in Lydia, but in one amazing testimony.  God will bring the people He wants to read all about Lydia.  God will work in the hearts of those that He wants this testimony to touch.  God is really what it is all about.  And in figuring this out, my walk with Him has been much stronger, much closer. 

I can say all kinds of great things about Lydia, she is my daughter.  I would say that about any of my girls.  They are awesome!  However, I can say that there is definitely something different about Lydia.  Most of it is probably because she has Trisomy 21 (AKA Down Syndrome!).  But that difference isn't from the things that you have probably heard.  That difference is in who she is, who she challenges me to be, who she challenges her sisters and her dad to be.  It is in how she affects everyone she meets.  It is this twinkle in her eye, her HUGE (cheesy) smile, her pure love and joy, her constant happiness.  It is in her ability to teach others more about themselves and she does not even know she is doing that!

I can go on and on about what this journey has taught me and how much I have grown.  I do believe, however, that God know exactly what we need.  I do know that Lydia is not a mistake by any means.  The plans that God has for her life are incredible, just like each one of us.  We all come in different shapes and sizes.  We try to categorize, we try to make one thing better than the other.  We were never intended to be categorized.  We were all made with a specific purpose and plan.  We all fit together. 

The best image is the body of Christ.  Christ knit each one of us together fearfully and wonderfully in our mother's womb.  We had a purpose and plan.  We are all members of the body of believers and together we work.  Apart we struggle.  So Lydia has a plan just like you and I do.  It does not matter what part she is, she is important.  When one of our parts of our body hurts, it effects the entire body.  When one part of the body is in pain, the rest of the body struggles, it feels that pain, it is harder to operate.

I guess what I am saying, is if we all embraced this, we would no longer have to categorize and we could all work together much better, just as Christ had designed.  However, sin is in the way.  We allow ourselves to walk down a sinful path.  We all do, as we are all sinners.  But we must chose the path God wants us to walk.  We must try to turn away from our sin and embrace His truth.

As our family continues down this path, I will continue to tell others about Down syndrome and create awareness.  I will continue to tell our story.  I will continue to try to use our testimony for God's glory.  I will try to create awareness as best as I can by sharing with others who Lydia is.  By allowing her to be herself and show the world that she is not defined by an extra Chromosome, but she is made extra special because of it.

I think it is hard for me to write and clearly explain what this means to me.  This is my child, I have prayed for her, I love her, and because of her I am such a better person.  It is hard to put into words who she is so others will understand.  And just as we are all judged in some way, she will be no different.  I do not feel like I need to defend her life, but I do feel like breaking down some old stereotypes will help.

One thing that I read this weekend really got me fired up and thinking.  It was shared on a nurses Facebook group page.  It was talking about the devastating defects of Down syndrome.  The "defects" that they were mainly referring to were just physical differences.  This makes me upset.  We all have some kind of physical abnormality.  God made all of us different, not one of us are the same.  However, why are her abnormalities devastating?  What makes having chubby hands, creases in our palms, slanted eyes so devastating?  I think educating is a really big issue. 

I do, however, understand first hand that there are devastating defects that come along with Down syndrome.  But many folks who have Down syndrome do not have these either.  Lydia was "extra" special in that she did get some of these devastating defects.  However, with the significant gains in the medical field, she is able to live a healthy and "normal" life.  Normal by definition is her normal life, not yours!  Just like it is my normal life and not my husbands!  But I would say now that she has been able to overcome the surgeries and things, she can look back and she what a strong person she is, what she has accomplished.

It is my prayer that more people educate themselves on Down syndrome.  That we would all embrace differences and that we are not quick to classify into a stereotype.  Lydia is more alike to me and you than she is different, the world just chooses to focus on her differences.

Happy Trisomy Awareness Month.  Thursday March 21, 2013 is National Down Syndrome Day.  I pray that we all reach out and educate, share your story!

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