I have been asking myself this question of "What is Down syndrome?" for a couple of days now without any answer. I have been trying to put into words how you describe Down syndrome. I have been trying to figure out why it is so important for me to share our story and educate others about Down syndrome. I have wondered and questioned what the importance is of sharing our story for others to judge and mock the life that we have.
Most of this comes from one simple conversation that I had last week. A teacher approached me and asked me if I could come in and share with her class about Down syndrome. I jumped at the chance. After all, I have been secretly wanting to do this with my life. I have been praying and patiently waiting for God to show me what He wants me to do. Does He want me to write a book, does He want me to share with others life about Down syndrome. I don't know, I have no answer on that yet, there is no direction. But I will take this opportunity to "get my feet wet" and I will savor every moment of this sweet opportunity.
I do believe though I will never answer that question of what Down syndrome is or why it is important for me to share our story, or why I am so passionate about educating others about Down syndrome. I want others to understand, to give Lydia a chance. But just as I cannot completely describe who she is, what it is like to live with a child who has Down syndrome; I will never change every one's perceptions, not everyone will give Lydia a chance. But I need to continue to try the best I can to educate those around me about her.
I have also realize something in reflecting on this recent question. It does not matter. I am not on a mad dash to change every one's perceptions, I am not in the grieving process that I feel like I need to defend her or our decisions. I don't feel like I need to explain her to everyone, explain why she may not be at the milestone you would think a two year old should be at, or why she is so small, or why she has almond shaped eyes. No...she is Lydia, sweet Lydia and I am proud of her no matter what. I want to educate others so they will give her a chance and not miss out on the opportunity of what she has to teach you.
When I write, I always lump her medical complications with Down syndrome. She is just Lydia; the entire package. But sometimes I may not accurately describe Down syndrome. I cannot separate one or the other, because all of it makes up Lydia. The fact is, a child who carries an extra 21st Chromosome is at risk for having some medical complications. But, many of these extra special kiddos don't. You see, they are no different than any other child. Yes, a risk is there, but does not mean that they will have that.
I like to think of Down syndrome as a label. When we grocery shop we read labels to inform ourselves. Sometimes there are warning labels and some times there are content labels. However, none of them accurately describe the product until you test it out. There may be several different types of noodles, they may all have the same label, but when cooked are completely different. Down syndrome is a label but not a definition. I think that is extremely important to keep in mind.
Your child may have almond-shaped eyes, one crease in their hand, a separation in the first and second toe, Petunia (low muscle tone), a crease in the back of their neck, a hole in their heart, thyroid problems, a pre-disposition to Leukemia, and the list can go on and on. However, as I was reminded in the hospital, Lydia has very few of these physical traits. Her physical traits do not dictate the "level of Down syndrome." Yes some kiddos have better cognitive skills than the next, but the physical characteristics do not determine that.
Just like any child, you need to have a relationship with them, you need to get to know them. The labels describe, but do not define a child with Down syndrome (nor any other child). The labels that come with Down syndrome mean as little to me as the size, color, and make of my underwear. That is information (and probably too much information in that case!) but do not make me who I am. You have gained some knowledge about me, but you don't know me and that certainly does not define who I am.
If you simply listen to the labels and do not take the time to get to know Lydia, you will miss out on unconditional love. She sees your heart and soul for what they are. She does not allow social influences to distract her from seeing you, who you truly are. She does not like to see you hurt or suffer. If you are crying, she will come and hug you. She loves to see you smile. She loves when she is loved back. She offers a hug to anyone. There is no color, size, financial wealth, that she sees...she just sees you.
There is a beauty in a love that is so untarnished as hers. There is a purity to her love that I try and try to teach my other kids, but they just don't get it. She does. There is a simpleness to her that I wish I had. There are so many things that she is that can't be explained; but must be experienced. I do believe that is like with anything, she is NO different than anyone else.
So how can you wrap who she is and explain it? How can you defend who she is and that she has purpose when it is hard to explain her (or anyone for that matter) without first experiencing it? I think it is foolish. I can't describe my other children so how can I describe her? You need to get to know each of them. Each of them has something different to offer and say. You must treat each of them a little differently because of who they are.
This is where it is really hard for me. I can't describe her, I can educate, I can encourage you to spend time with her (or someone with Down syndrome) so you can experience first hand the things that I am trying to say, to describe. But then I get frustrated and upset that we can't see beyond these labels. Why do I have to describe her, why do I have to defend? And that is simply where I am at...I don't. She is perfect the way she was made. She has value and worth because God created her for a specific purpose. She is my daughter and I could not be more proud of her.
I will educate to break down those barriers, but I will not feel like I have to defend her or describe her any longer. I want to make the world a better place for her, where it is easier for her. However, I do realize that this is our temporary home; this is not what life is all about. So I will educate and encourage, I will advocate on her behalf.
I am not asking for a cure. I don't want to change her, wouldn't want to change her. I believe she is a piece of God right here on earth. She is still a sinner and far from perfect, but she adds a whole new perspective to life. She unwraps a whole new way of thinking, adds a new way of looking at something. Sometimes challenging but always rewarding. She makes me stop and get out of my box and open up new channels of thought in my brain. I am still learning how to do this, how to appreciate this; but it is so amazing. She has changed me by simply being her.
There is beauty inside of everyone, if only we could take the time to see it. If only we could overcome ourselves, our way of thinking, our stereotypes and get to know the person.
She was not an accident. It was no accident that the cells divided differently when she was conceived. I did nothing wrong to get her. There was nothing differently that I would do in my pregnancy to change this blessing that was created just for me. Her life is just as important as any of her sisters. Our path may have gone a different way, but we will enjoy the scenery along the way. We will take the different path and curves and bring glory to God for all of it. She is a blessing, not a mistake. It is time we as a society realize that. It is not about changing her, but changing the world for her. What a sad thought that we think, as a society, we are better than the next person. The only thing we miss out on is a blessing; the opportunity to change ourselves. What a devastation that is.
Down syndrome, what is it? To me, it is nothing more than a label, some information that tells me very little about a person. The possibility that a person may have a certain physical characteristic or an increased chance of this or that. There is very little useful information that this label carries. What is important lies within the person; their soul and ability. Take a moment to go beyond the label that describes and get to know the person who defines themselves.
In my mind I thought of many things that Lydia is. I have thought of many things that she is not. However, once I sit to write at the computer, that escapes my mind. There is no way of me accurately describing her. I could not accurately describe a marriage much less my marriage; because each one of them are different too! How do you describe yourself to someone? your children? your parents? your spouse?
Help me to educate about Down syndrome. Help me to encourage others to go beyond the labels; beyond the information and the possibilities! Help me to encourage relationships and experiences. Help me to create a better world for people like Lydia. She is so misunderstood in this world. There is no cure needed, just a new change in attitude and a breaking down bad stereotypes.