These are some of the questions that have been on my mind recently. I have pondered them, prayed about them, and just sat silently thinking about them. Before Lydia came along I never quite understood why it was so important. I was connected to the world of Down syndrome. My cousin has a son who has Down syndrome and my husband's friend growing up has Down syndrome (he even was in our wedding). But I never understood like I understand now and that is why I write.
It was at the diagnosis that I started to understand. At 20 weeks we were delivered the news. We had a "chance" of having a child with Down syndrome. While our diagnosis was given in a positive light, there were questions and whys and what did I do. I think that there is still astigmatism that comes with this diagnosis that automatically puts you in a very elite class. However, it is not an elite class that everyone is ready to sign up for until you have experienced it. Now I would not trade it for anything!
That diagnosis began our journey into the world of Down syndrome. I remember telling people and it seemed as though everyone knew someone else who had Down syndrome. "Oh, my sister's friend's brother is Down syndrome and he is so happy. You will be just fine." I remember just wanting someone to congratulation me on the precious life I was carrying. I did not want anyone to classify her, no one did that with my other children. I remember questioning what was so different. She was labeled even before she had a chance to show the world who she is......she was Down syndrome, she would be happy all of the time, and we would be just fine.
I remember one ladies perspective, a complete stranger who stopped me in the store and felt the need to give me her opinion. After asking some questions, and my daughter mentioning Down syndrome she told me (my daughter was right there) "Oh, your baby will amount to nothing, she should be aborted." That was the future that many saw fit for my child. It was not the "Oh your pregnant, congratulations." I heard a lot of "I am so sorry for your tragedy, I am so sorry about this, I am so sorry you have to go through this."
Our baby was born with a lot of medical complications. She spent time in the hospital. We continue to spend time in the hospital. However, this is her story. This is her journey. She handles it all with grace and compassion and she teaches everyone she meets along the way. Hard or unfair really does not come into play, this is her story and she lives it beautifully.
I still hear unwanted comments, I still hear old stereotypes and people always tell me how happy she always will be. I hear that we will be OK and I am special because I was chosen or Lydia is such an angel. I guess among some of those thoughts there is some truth. I am special that I was chosen to be her mom, but I am special that I was chosen to be Ellen and Allison's mom too. We will be OK because there really is nothing different about Lydia than Ellen or Allison. However, the other comments could not be further from the truth.
The fact is, Lydia is a person. She is just like her sisters. She has a beating heart, a personality, she gets angry and is stubborn and she is laughter and joy. She is all of it. She is a person with a voice and a mind of her own. She is delayed, in some areas. She holds a pencil, crayon, marker, pen like no body's business. She, however, cannot dress herself completely on her own. She is a hard worker and she usually works on something until she gets it. She is not interested in potty training, however, she does understand the concept. She does not talk too much but she can communicate to you exactly what she wants.
We walk to raise money because it is important when families learn that their child has Down syndrome, some things will change, but everything will be OK. It is not as scary as the false perceptions and stereotypes that are out there. We walk to raise money because these families need help and support to give their child the very best chance in life. We walk to raise money because if we are able to change the mind of one person, we have accomplished our goal. We walk to raise money because spreading awareness in our community will provide for a better future for our daughter and her peers.
We recruit people to come on our team because we want these people's lives to be impacted like ours. We want to show off the ability that our daughter has. We want you to interact with others so you understand what we understand, there is no difference. We recruit people to come on our team to walk so you can hear the speaker at the walk. The lasting impression that they will leave on your heart is priceless. We recruit people to walk on our team so you can come around us and show your support too.
There is no cure that we are looking for, only a better place for our daughter. Down syndrome, in my opinion, is not something that needs a cure, but it does need acceptance. Down syndrome is a journey just like anyone else. Yes, there are tendencies that describe people with Down syndrome, but that does not define who they are.
By sharing our story, we are opening our lives into a sneak preview of what it is like to live with Lydia. She is Down syndrome, she is a daughter, she is almond eyes, she is a sister, she has congenital heart disease, she has an extreme love for people, she is happy; a lot but not all of the time, she is determined to do what her sisters do, she does have Chronic Lung Disease, she is Lydia. I pray that our story touches your life in some way and you can appreciate Lydia and Down syndrome. I pray that our story has changed you and you can help us break down some of those walls and change the stigma that is associated with Down syndrome.
If you are a new mother, a new family, a new grandma or grandpa who has just learned someone with Down syndrome will be joining your family...CONGRATULATIONS. In sharing our story, if we have created awareness, broken some stereotypes, if we have opened up your mind to how beautiful life is no matter the label than we have accomplished our goal.
I am passionate about creating awareness, sharing our story, and helping other families. I am passionate about creating better communities where all life is precious and valued. A disability comes in many shapes and forms, some you can see and some you can't. However, everyone has a story, everyone has an opportunity to impact someone and everyone has an opportunity to change some one's mind.
Ellen and Allison understand this concept. This year they are Peddling Awareness for Down Syndrome. They decided they would raise money by biking miles in honor of their sister. It is that important for them to raise money. As a mom, my heart is full. They want everyone to know what a joy Lydia is. They are the big protective sisters, but they are in love with her and they see no differences in her. They help her (maybe a little too much) but they also encourage her and push her to see her full potential.
Please consider joining our team or supporting us as we try to change the communities we live in. I would hate for another mother or family to receive a diagnosis (prenatally or at birth) and feel like it is b ad. I would hate for another family to feel like there is no hope. While there is a normal grieving process that usually goes along with any disability, knowing that this journey is awesome, makes all the difference.
https://secure.qgiv.com/hobnob/account/146053 Here is our team page for the Down Syndrome Awareness Walk for the Fox Cities. We would love for you to join our team, or help us raise some money.
And if this has touched you, please share this with others. This is why we do what we do. This is why we share our story. If it helps one person, we have accomplished our goal. Also, it is great encouragement for Ellen and Allison to see supportive comments and have people pledge.
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