Many times children with Down syndrome are referred to as having Designer Genes. They are specially created with 47 Chromosomes rather than the normal 46. They have one extra gene that makes them totally special. They have 3 copies of the 21st Chromosome rather than 2. They are special, there is no doubt about it. However what about this Designer Gene thing?
I have been thinking about this lately. Maybe it has been because I have been wearing a lot of comfortable clothes. Things have been a bit stressful around our house and most days I don't have the energy to make myself look pretty, to dress in anything than what makes me comfortable. What is wrong with that? As long as I am comfortable right?
There are many things that Lydia has taught me. There are so many lessons that she reminds me of daily. She is just 21 months today and yet she has changed my entire perspective on life. She has taught me more in the past 21 months than I have learned in my 32 years on this earth. Many people may argue how a 21 month old could change you, but I would encourage you to think back of the first time you held your child, how they took your breath away. I would encourage you to think about how you could love someone you did not even know. She has changed me because she is who she is.
And maybe she has not changed me as much as what the label that she caries has taught me. As a society we chose to label Designer Genes as bad (this is funny because many people spend WAAAAYYY too much money on these jeans to fit in or to look a part). As a society we stereotype and say that they will never be this or that. People are often very quick to voice their negative opinion. However, every single day she defies that label that make her Lydia, just by being herself.
Every day she meets a new milestone in her time and in her way. She looks around with a BIG CHEESY smile and waits for you to clap and cheer her on. She is oblivious to the outside world and what they say. Each day she sets her heart out to do a new task. She is determined and nothing, no label or stereotype, will stand in her way. Despite any bad (the needles, constant doctor appointments, people poking and parading at her, mommy making her take medicine she does not want) she has a smile on her face and goes about her business.
She feels just as we feel. She feels in a deeper way. She is mostly happy, but she does get upset and frustrated, sad and angry. She loves hugs and kisses and smiles. Most of all she loves to give other people high fives and watch them smile. You see, watching others around her be happy makes her happy. When there is yelling and fighting in our house, she does not tolerate that well. She will crawl over to you and hug you or kiss you. You see, she only knows how to be herself. She does not know how to fit into a label, she does not know stereotypes, she only knows to be the person God created her to be.
She is comfortable in her Designer Genes. She wears them well and they look so good on her! She can teach you a lot about her Designer Genes and what they really mean. They are not meant to be worn to classify you as someone who is cool or popular. They are not meant to be worn to be looked as bad or not as capable as someone else. They are meant to be worn proudly and comfortably. They are meant to be worn as part of who you are.
So as I sit in my comfortable clothes I think about how comfortable I really am. Do I LOVE who I am? Do I feel OK in my skin? What do I do for other people? What makes me who I am? Is it how I look or what I wear? Does my own skin fit who I am trying to be?
I have a lot to learn from Lydia. You see, she is comfortable where she is, I am not. I am always trying to improve my look. I am trying to loose more weight, dress to fit in, have the latest and greatest, spend waaaayyyy too much time and money on makeup and beauty products that portray a fake Tiffany. All I need to do is look at who God created me to be and be that person. Yes, sometimes the outward appearance helps me to feel better, but you see, that never really changes who I am, in never changes the inward appearance. I can pretend on the outside to be someone else, but I am still the same unhappy discontent person on the inside.
Maybe you have to experience to understand it, but she is my role model. She teaches me about me more than I know. She is comfortable in the skin she was born in and she is proud to display that. She does things because that is who she is, not because someone tells her to, because she needs to live up to a certain standard, but because she is being exactly who God created her to be.
I think we have it all wrong as a society. We label Lydia when I would argue that we are all longing to be as comfortable in our own Designer Genes she is. I think we all long to be confident in the skin God created us in. I am sure there will be days when she wants to fit in, that will be hard; but I am sure the days will be far less than what my other girls experience. You see, there is a twinkle in Lydia's eyes that you can see that is different and I want that twinkle.
I am the blessed one because I have that role model each and every day to help me learn. I am a far from being comfortable in my "comfy clothes" but I am sure going to try. I want my kids to have the kind of role model that Lydia is. I want their mommy to be comfortable in her own skin, to be confident and to be who God created her to be. I don't want to dress to fit in, but I want to be who I was created to be. I want to wear my own Designer Genes as comfortably and confidently as Lydia does.
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