Happy Trisomy Awareness month! My Facebook news feed is spilling over with all kinds of pictures and saying about Down syndrome, Edwards syndrome and many other different Trisomy's. Part of me wanted to jump in and start posting, write a whole bunch of blogs and flood everyone else's news feeds with facts and pictures of sweet little Lydia (well more than I already do!). However, I can't seem to formulate one single word.
I have been thinking lot about what awareness is to me and why it is so important. Why do I wish to share Lydia's story? And really the bottom line is, I have always felt that I needed to defend why I chose to have Lydia. I have felt like I needed to defend why her life is just as important as my other daughter's. I feel the need to defend her when we are out in public, when we are at her IEP for school. I feel the need to defend her on social media or through my blogs.
I personally have had some pretty nasty words uttered to me regarding Lydia. Those stick with you even if you don't dwell on them. They are like small whispers that stay in the back of your brain and haunt you at very odd times. I have also read so many times how horrible the information on the Internet is about Down syndrome. I personally have not Googled it, but I have heard there is a lot of negative things. Just from my personal experience, I have heard more about what she cannot do than what she can do.
I think for a mom, this is horrible. You read the statistics about how many babies are aborted when there is a prenatal diagnosis of Down syndrome. Why? Is it because of all of the negativity and focus on what can't be done? Is it fear? I don't know, I can't answer that. But I guess that is what leads me to the beginning of my journey with awareness. I want those around me to know what Lydia CAN do and what a true blessing she is. I am not out to set the world on fire, my blogs hardly ever get read. That's fine, I blog to help me and hopefully to inspire others. But I want to be honest with those around me. Life with 47 Chromosomes is pretty much awesome!
I am upfront about my faith and how I rely on it in every aspect of my life. I don't try to push it on anyone, but I will not compromise it. That is the same with my daughter. I will not push her on anyone. I realize that there are true fears and resistance against someone who is different (I personally don't understand it, but I do know that this is a real fear). However, I will never compromise what she can do or think that she is less of a daughter than any of my other girls. She has a purpose and a place in this family and I am proud of that.
Today as we were cleaning rooms, she signed music. She loves the Karaoke machine and always wants to sing. We put Frozen in and she turned it to Let It Go. She gave me a mic and I immediately picked it up an started singing with her. I am sure it was one of the worst sounds heard, but we were making our own music together. There was a time that I would not sing in front of anyone. I was once told that I did not have a very good voice and I should just keep that to myself. I don't have the best voice, but it is not horrible. However, those words kept me from singing.
However, once Lydia came along, she taught me to embrace the moment. When we were in the hospital she loved it when I sang to her. Because we did not know what the next moments would bring, if we would ever get another chance to make memories, I sang to her when doctors and nurses were in the room. I kept doing it and by the end of our five plus month hospital stay, I never even considered not singing.
Today was no exception. We jammed and we laughed and we made some great memories. I have learned that it really does not matter what other people think. The ones who really matter will embrace her no matter what. She has embraced my not so good singing voice and I have embraced her 47 Chromosomes.
I don't want the negativity to be part of her journey. I don't want her to think because she has Down syndrome she is less or she can't do something. I understand there may be things that she is not capable of doing, but I don't want that to be set before she even tries.
That is why it is so important to create awareness. I don't ask that you be her best friend, you don't have to like her. But I want you to be aware of what she can do. I want you to know she is not less, she is just different. And after all, we are all different. Each of my girls have their own strengths and their own weaknesses.
It is time to start showing the world what a child with 47 Chromosomes CAN do and not focus on what they can't. Yes, there are some things that are more typical, but that makes them who they are and does not define them.
My awareness journey is to bring awareness and to create better communities in which Lydia and her peers live. We have been completely blessed by her school, our friends, our family, and our church that they completely accept her for her. She has a place and it is no different than me or you!