I wish I could say that the day you were born was one of the happiest days of my life, but sadly, it was quite the opposite. That has nothing to do with you, and everything to do with me. You see, your mommy was clueless.
When they told us you had Down syndrome, it was a big shock. As they placed you back in my arms, I knew I felt the love that every mother feels for her baby. You were beautiful. The fierceness of the love I felt for you was overwhelming. Our bond was instantaneous, but I was also terrified. What I didn’t know about you or your diagnosis was that we had been given a gift. You were going to teach us about unconditional love, joy in unexpected places, and the tenacity to move forward.
I am so embarrassed about what I thought it meant for us on the day you were born. I pictured a life spent taking care of an invalid. I pictured our vacations and dinners out, ripped away from us. I pictured a life of difficulty. I pictured your sister, who at that point was the center of my world, forever changed and taken away from the spotlight she lived in and adored. Everything I pictured was wrong. I am putting all of this out there in case there is some other mom, lying in a hospital bed right now, wondering if her life is ending. It’s not.
Our life has been changed by you and your diagnosis, but they are welcome changes. We do everything we did before you came into our lives. We even do some new things, thanks to you. You make vacations better with your smiles, and sass. Oh the sass! Dinners spent out are loud and full of humor, as your dad and I watch your sister and you misbehave. You yell, you laugh, and you throw things (sometimes at her). Your sister and you have a love story that melts my heart each day. You also fight with each other, like all sisters do. Haley has made the spotlight bigger, and you both revel in it. Haley protects you, and it’s a role that she has chosen on her own. Truthfully, I think you might be protecting her soon. You are a feisty little girl.
It's been two years since you arrived in our lives, and now I can say that I am grateful. I would not change one thing about you. You are tenacious. Every day, I watch you struggle to stand, to walk, and move around. Your muscle tone holds you back from physically moving, but it doesn’t slow down your spirit. I know you will be walking soon enough, but for now, you get where you want to go, through will power. You are a sassy little girl. I thought I knew what sass was with your sister, but Sienna my love, you take it to a whole new level. It’s hard not to laugh when you throw things, when you scream "no," and when you slap your sister or me.
You also have an incredible heart already. Whenever your sister is upset, you start to cry right alongside her. You are a daredevil. When Dada throws you in the air, your laughter is infectious. You love to go on rides, and it would appear that we have another thrill seeker on our hands. You do not openly give affection away. You make people earn it, and sometimes you make them work really hard (sorry Aunt Kristy). You are a lover of music. You dance and sing all day long. Our house is full of laughter each and every day.
My Sienna Mae, I could and do write a blog on everything I didn’t know, before you were born. I didn’t know that your adult counterparts with Down syndrome were doing such amazing things, like lobbying for their rights, teaching Zumba classes, starring in reality shows, writing books, owning businesses, living independently, and getting married. They are enriching the lives of their friends, family, and the community. Before you came along, I didn’t know what the word advocate meant. I didn’t know about the friendships I would make in this wonderful community. We are grateful that you have introduced us to such amazing people.
Our family made this video to share our journey. If there is another mom out there feeling hopeless, I hope this video finds her:
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