We are just three short days away from National World Down Syndrome Day. I am challenging myself to write three posts that are related to creating awareness about Down syndrome. This is something that I have felt passionate about since I found out that our baby has Down syndrome. As I was praying about what to write, the question of why do I care about creating awareness about Down syndrome popped in my head. After thinking about it for awhile, I really don't have a good reason, it just is important to me.
I really don't care if any of my children are "accepted" by world standards, but I do care if they are following Jesus, if they have accepted Him as their Lord and Savior. I really don't care if the world makes "fun" of my children or calls them names as long as they know that their parents love them and will always be by their side, and they are accountable to God. May sound harsh, but when it all gets boiled down, it just does not matter, faith is really what this family is built on and is what holds us together!
I don't care if the world does not accept Lydia as she was created; her family does and that is all that matters. God created her for a very specific purpose and we love that. We accept her for who she is, just as she accepts us for who we are. Who could want any more than that? She has made us better because of who she is. She has opened our eyes to a whole different world, one that is better!
I think I care so much about creating awareness because I want the whole world to learn what I have learned from her; from walking on this journey. While I realize that not all of us are meant to learn every single lesson in life, I feel that it is important to know what Down syndrome is by a mother, a family rather than social media, a medical professional, a book, a diagnosis...from folks who are uneducated or have not interacted with someone who has Down syndrome. I think it is funny that we would not ask a question to learn more about a TV to a car salesmen, why do we hold tight to the information the media give us. It is not always accurate. We judge and make stereotypes before we even get the real facts. That is unfair, and I want to do something to change that!
I once was someone who did not know a person with Down syndrome. I once was someone who believed the stereotypes. I once was someone who was totally uneducated about Down syndrome. Often times we all are uneducated about something until it affects us. However, my eyes have been opened, my heart has been changed; God knew there was an empty spot and filled it with Lydia. Those things that I thought that I knew about Down syndrome, have been changed, they were wrong, I have been opened to an entirely new way of thinking. Any fear that I had is now replaced with love. Complete love, love like I had never known before. It is a choice, there are days that are so hard, but the love she gives is indescribable. What she has taught me, yes a 19 month old, is immeasurable.
While I can never be able to put into words our journey, what I have learned, what Lydia means to me and our family, I try very hard by sharing our journey. Until you have walked in the shoes, I understand that it is hard to really know. However, I think just by meeting Lydia you would agree she is special. She may be special because she carries 47 chromosomes, or she may be special because she has a big smile. She may be special because she will tug at your heart strings because she is so cute (Ok I am a little bias!) or she may be special because she will look you right in the eye and tell you she loves you. She wears her personality on her outside for everyone to see, and it is something that most people take notice.
I am not asking for money or research to cure her. She is incurable. She does not need to be cured from anything. She needs to be accepted. Sometimes our media clouds everything with cancer research or this research or that. However, sometimes just accepting who someone is for what they were created is the very first step. Please hear me, I am not putting these efforts down, but what I am asking for is acceptance of people who are a little different, may look a little different than the "norm", may take a little longer to get something that is second nature to you and me, and breaking through the old stereotypes that just do not describe someone like Lydia.
I think I mentioned this before, but I saw a post on Facebook from a nurse about the devastating defects of Down syndrome. Almost everything it mentioned was a physical defect and not a really devastating defect. Lydia does have some devastating defects. It was scary when she went in to get her heart fixed...that is a major surgery. There may be possible complications that she will have to deal with for the rest of her life. However, it is fixable which is great. It was heart aching learning about her Esophageal Atresia. The "fixes" were not good...all of them came with a laundry list of possibilities. Her surgery was devastating. However, she is proving every day that she has what it takes to overcome that and prove everyone wrong. But her chubby hands, her low lying ears, her creases in her hands, the space between her toes, her slanted eyes, her short nose, her larger tongue, her crooked teeth...I think they are cute, they make her who she is and they are not devastating at all. We joke because I find some of those "devastating defects" in myself, my husband, my other children, and she does not have many of them. Those are physical traits, that they may or may not have, and they are not devastating at all.
Acceptance and knowledge of others is so powerful. She has Down syndrome, but Down syndrome does not have her. She is classified by many things that Down syndrome has, but she does not fit all of them. Just as my other children have different characteristics about them, it does not define them. Why should we then classify Lydia differently because she has Down syndrome. That means nothing more than she has an extra Chromosome, she is extra sweet, she is extra special, she is extra determined.
I think you would be surprised that she is more alike with her sisters than she is different. She gets into things and she reaches her developmental milestones. She may be a little slower than some, but she gets them. She does everything with a smile and there is always pure joy in her face and in her heart. It is enough just to melt you and inspire you to be a better person.
When I think about the 3 Chromosomes, I think about how important the number three has been to me and my husband. We dated for three years before we were married, when we chose the date of our wedding we had 11/1/03 (three ones to compliment the 03), we believe that a marriage takes three, we did not have kids until we were married for three years, we have three children. OK...maybe I am going overboard, but she was meant for us. The 3 Chromosomes are special, they are wonderful.
I challenge you to share this blog or another blog about Down syndrome. I challenge you to continue learning about Down syndrome. I challenge you, if you don't already know someone with Down syndrome, get to know someone, they will change your life (be prepared). I challenge you to share with others about Down syndrome. And on Thursday March 21, 2013 wear blue and yellow proudly and tell others why. Or if you participated in a walk with us, wear your shirt and share about Down syndrome.
One of the organizations that I like on Facebook is IDSC. They have been a great support for me as we continue to walk this journey. They recently put out a video about creating awareness for Down syndrome. I think that it is awesome. Please take a couple minutes and watch this video and share as you feel led to!
Sometimes it is so hard to write specifically on Down syndrome. I just feel like I get tongue tied and can't quite communicate as I would like. I hope this makes sense. I feel passionately about creating awareness because it is my daughter. I once was uneducated and now I feel so blessed to be Lydia's mom. It is something that I can't explain, but if you know her, you probably understand too. She is who she is and I am so proud of that! Aren't we all!