My Everything. My Joy.

I begged and pleaded with my parents that I wanted a brother or sister! So you can guess, at the ripe ole age of five, how excited I was to find out that my mom was in fact having a baby! I was so excited! I was a girly girl. All of my dolls and stuffed animals were my children. So when finding out I was getting a brother or sister, I was beyond elated! I would have my very own, live baby! My dreams were coming true!

The Birth of an Angel

Sheena was born on January 30th, 1985. Before testing for Down Syndrome was a thing. So you can image my mom’s shock when she saw Sheena and the doctors told her she in fact had Down Syndrome. I think it’s something that would take any parent time to digest and absorb. I cannot even imagine. Giving her up or putting her in an institution was never on my parent’s brain. The first time I held her, I was in love. When my parents brought Sheena home from the hospital they sat down with me to explain what Down Syndrome was.. I’m pretty sure I was like “Cool. Can I go play with my baby now?” I just didn’t care. She was my sister and I loved her!
My mom began using my Kabbage Patch premie cloths to dress Sheena. It was adorable how little she was! I was inseparable from her. Wherever she was, whatever she was doing, I wanted to be with her. I was obsessed. I helped with all of her therapies, when she’d wake up before my parents, I would take her down to watch cartoons with me. One time, when I didn’t know babies couldn’t sit up, I put her on my rocking chair. That didn’t work out for her or me and she fell onto the floor and bit her lip. There was blood everywhere and thinking about it still makes me feel horrible. But she survived!

My Shadow

As she grew older, she loved copying whatever I was doing and wanted to always be with me (which started to annoy me). And forget about keeping her out of my room. I would try to hold the door closed and she always managed to find her way in with a massive amount of strength! She would leave her bed at night to come into mine. When I would go to school I would think about how scared I was for her to go to school. I was so worried she’d be picked on. (Turns out she was WAY more popular than me!). I actually even thought that I would make sure I was friends with the football team as I got older and then if people were mean to her, I’d have the football players put them in their place. I mean, I thought this through! It turns out, that was all wasted energy! Such a social little butterfly.

Inexplicable Joy

I cannot even begin to describe the joy that she has brought into our lives. There is something so incredibly special about Down Syndrome. A joy that cannot be described until you’ve actually spent some time in our community. Gotten to know what it’s about. There is happiness in almost everything they are doing. She is not always happy with being around us, lol, but she is always happy with friends!
Wherever we are, whatever we are doing, she is the life of the party. She HATES talking about our yearly Sheena cruise. Like she gets ticked off that we are even talking about it. BUT! When the day comes, she is beyond excited. She will talk all about the dancing (which she’ll do to the last song), the dolphins we might swim swim with. The naps we take (it’s the only time she’ll nap! And it’s because I’m sneaky!). She will talk about how I sneak out every night to get us pizza and cookes after my parents have gone to bed. Oops. She’s just so amazing.
If you’ve never met an adult with Down Syndrome, contact me now! We need you to get involved! And I’m telling you right now…you will find interacting in this community will open up your heart beyond what you ever thought was possible. And you’ll begin to experience what the word “joy” really means.
My sister is my life and my world. She has been since I was six years old. I have had to grow up faster than most. I have had more repsonsibilities than most. I have had to face what it could possibly mean to have a disabled child of my own. And I would like to share my honest thoughts.

Honest Work

I do not want a child thru I birth. If I found a man I loved, and this was something he couldn’t comprise on, we’d talk. But for me I do not have the normal desire that many women have for a child. I do not have ticking time bomb in my uterus ready to explode any day now. I never have. Have I felt like I should have a child because everyone tells me I have to?!? Absolutely. But I knew long ago, kids are not for me. And everyone tells me…” You’d make an amazing mom!!!” Yes! They’re right! I would blow the shit out of mummying! I would be the best mom ever! But I am done. I had my baby. I raised her. I worked my ass off. It was worth every second! But I also watched a mother who cried because through her teens we couldn’t get her bowels enough under control to not have accidents every day. I watched as my mom fought battle after battle to get my sister the best education she could get! I watched as my mom cried watching other 18 year old’s send their kids off to college, knowing that she would never experience that. That she would never truly have an empty nest.

My Forever and Always

As much as none of us would never change anything for my sister, there were challenges. And honestly? She is easy now. But in every relationship I enter, it’s just something I let the guy know. This is my forever. This girl. If my parents go before me (which my dad says won’t happen because he’s going to live forever!), she’s mine. And there’s no compromise there. I will not put her in a home (unless it was a bad ass, awesome home. With robots). But she’s the love of my life. She is my child. Like so many talk “you will never know the love of a child until you have your own.” I highly disagree. She has been mine since I was six and a half. She will be mine forever forward. Maybe my love is different from that of an actual birthing mother. But I’d always challenge it! Sheena is everything to me. I would not be who I am without her. Good and bad. Everyone, even strangers, know that I physically don’t think I could survive without her. There’s a string that attaches our hearts. And even when when she tells me to “go away!” because she’s in an intense karaoke match, it’s still attached. I honestly don’t know life without her. And I am so proud to be her sister and every day I praise God for granting her to us. We must be something special! Every life she touches, she changes. By doing nothing but just being her. And how cool is that!?!? My sister is always the coolest girl in the room. And that’s pretty freaking Amazing.

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