As World Down Syndrome Day approaches (March 21) I have wondered why loving Lydia is so much different than my other girls. While the love I have for each one of my beautiful girls is different, is tailored just for them; there is something very different about Lydia. I don't know exactly what that is? So in honor of World Down Syndrome Day I thought I would explore it and allow others to know about "This Kind Of Love!" (This Kind of Love is the theme for the International Down Syndrome Coalition's initiative for creating awareness about Down syndrome!)
Finding out at 20 weeks that there is a chance that our baby would have Down syndrome was frightening. The "news" was delivered in a very good manner. My doctor had called and assured me over and over that this baby has been fearfully and wonderfully made and we would love this child no matter what. He was right, but what was it about hearing your baby may have Down syndrome? I remember crying but not really sure why. I remember feeling scared, but not sure because I was not even sure what Down syndrome was or what it all meant.
I knew one thing for sure, for some odd reason my baby was coming with a label. For some reason my baby's future seemed to be limited and labeled. For someone reason everyone seemed to know what my baby's future would hold besides me. I went to the dreaded Google to see what others had to say about Down syndrome. In all honesty, there was nothing really good that I could find. Why was all of the good stuff at the bottom and the scary (well, outdated and untrue stuff) at the top?
Fear struck me hard. Oh my, what was going to happen now? I wanted a baby, not a label. I wanted to love a child and I wanted them to love me back. I wanted another sibling for my other daughters to play with and laugh with and be best friends with. I wanted to teach and love another child. I was not expecting a label, I was not expecting a complete story as some wanted to give me (stating that they knew the life we would live with having a child with Down syndrome), I did not want a death sentence (so many people told me sorry instead of congratulations). I just wanted a child to love and a child to love me back and did the label of Down syndrome really mean that I could not love my child or they could not love me back?
Then at 33 weeks pregnant a bomb shell was dropped on us. Our baby had MAJOR medical issues. Now that is something more to grieve than Down syndrome. That is something to fear. Our baby, as we found out at 33 weeks we would welcome another girl into our family, Lydia would have a heart defect. They also mentioned something else with her stomach, but were unsure of what exactly it would be until she was born.
The next weeks were consumed with bed rest and doctor appointments and tests. This was scary stuff. Our baby would have to fight for her life. Our Lydia would have to spend time in the hospital. What would that do to our family? What would that mean for her future? I was scared, I wanted this baby so much, I wanted to love her and I wanted her to love me back.
July 25, 2011 at 9PM we welcomed Lydia into this world. She was the most beautiful little girl with a very good set of lungs on her. I fought to hold her for a moment. As soon as she was in my arms she was silent...see she knew who mom was and she was showing me love. She gave me a moment that I needed to get through the next 24 hours. I was instantly in love and I turned on fight mode; we had to do whatever it took to make sure she was OK. See, I had my baby and she did love me back....that is all that I wanted. And there was no label that could describe that moment.
As the next days folded into weeks which rolled into months, we watched our baby girl fight really hard for her life, we watched her accomplish milestone after milestone. We prayed like we never had before, our faith was strengthened, our marriage was challenged, our family was separated. But through it all, she loved each and everyone of us. She was teaching us so much and we, as a family, were complete but changed forever. We would never be the same, but we were so much better! We were stronger, we were able, and we saw life through a whole new lens.
See, Lydia has taught us about what is important in life. She has taught us to slow down and appreciate every step; the smallest ones are the most important too! She has taught us what it is to love with no strings attached. She fills us all so much. She makes us laugh and she completes us as a family. How can one little girl do that? I am not sure, but I know that she has changed our family, she has shown us and taught us and we are complete.
I know that our road is not just Down syndrome but her medical issues play such a big role into everything. Together, Down syndrome and her medical complications make her Lydia, and she is one special girl. She has more love to give than I can even explain. She is a ball of energy and she is always making us laugh. She is the first one to give a hug when someone is hurt, she will even help the other girls when they are on a time-out; crying with them and everything. She is a hard worker and she never gives up. She has a disposition in life that is simply contagious. She is my special angel here on earth. She has changed me in ways that I never thought were possible. She has loved me back in ways that I never thought were possible...that is all I wanted! She is the child I prayed for, she is my answer to prayers.
A label is just that, a label. I remember when I was little and I played the game MASH. I was suppose to have 10 children, live in a mansion, drive a limo, and be married to Zac from Saved by the Bell. That label does not resemble the life I live today, just like the label that many described to me about Down syndrome does not describe Lydia at all. It is the love that describes her and who she is. I can't really put it into words, but she is amazing.
Maybe it is the fears that I faced before knowing who she was that has allowed me to think she is simply amazing. Maybe I needed those fears to realize how simply amazing she is. I don't know, but I could not be more happy and feel anymore blessed that she was chosen to be mine. She is fearfully and wonderfully made, like all of my children, but her "little extra" really does mean something. There is something about her, but it is nothing like what you would expect.
Our life is anything but easy and perfect. However, I could not ask for anything else. I am constantly learning and becoming a better person because of her. Because of that label that I felt was placed on her before she was born, because people felt like her future was already written before she was even born, that is why I am so passionate about creating awareness, about sharing our story. I want the whole world to know how awesome she is. I want the whole world to know how wrong they are by labeling someone who happens to have an extra Chromosome. I want the world to be better for my daughter...she deserves it. So until there is so much awareness about Down syndrome where everyone is accepting of her for who she is, I will continue to share our story and advocate on her behalf. I am so so so so blessed by her!
Here is the video that IDSC has put out! What a great video. I hope you enjoy it. And don't forget World Down Syndrome Day on March 21. Wear your blue and yellow to create awareness for Down syndrome!