The date 3/21 is World Down syndrome day (WDSD) because it represents the 3 copies of the 21st chromosome that people with Down syndrome have. WDSD matters to me because I love someone with Down syndrome.
Fourteen years ago, I feared Down syndrome and everything it would mean for my daughter, Jaycee, and our family. I felt lost the first couple of years as I processed her diagnosis. I wasted time figuring out how Down syndrome would affect Jaycee. All I really needed to do was simply see her. Jaycee was my daughter. The Down syndrome faded into the background where it should have been all along.
Jaycee is a unique individual who happens to have Down syndrome. She is full of personality, and she gives me reasons to smile daily.
If you haven't had the pleasure of meeting my daughter, then let me tell you some things about her that I absolutely love.
1. She puts things on her head for a laugh. My cup, phone, Bible, and tv remote have all been on her head. Jaycee says, "On my head," as she does it, and then she waits for me to pretend to be mad. I don't know why she started doing this, but it's funny.
2. "Butt" is her favorite word. It is one of the clearest words she says too. There's worse things to say.
3. She gives out nicknames that stick. Some of these include: Deer, Daddy Beast, Joel Butt (see number 2), Bubba baby. When I'm mad, everyone refers to me as a mad hippo because of her.
4. Jaycee has become a savvy clothes shopper. She previously hated shopping in any form. Now, I can't shop for clothes without purchasing something for her. She loves to shop!
5. Jaycee knows how to use her tone of voice to say 'mom' in a frustrated way. It's funny the things she gets annoyed with that cause this tone to come from her. If I drop something in another room, she will yell out, "Mom!" If I sneeze or trip or make any mistake, she catches it and yells, "Mom!"
6. She has a "princess pose" for pictures. The pose consists of one hand on her hip and one hand behind her head.
7. Her memory for some things is completely amazing. She recalls being in certain resturants with people months later. I don't know why or how these memories stay, but they do.
8. Jaycee has a specific way she wants her hair. Right now, she likes to have a pony tail with a JoJo bow. Her second favorite look is a flower clip in her hair.
9. Jaycee loves the band Skillet. She hands me the ipod in my van and asks for "illet."
10. She loves Baby Shark too. Skillet and Baby Shark are both pretty important even if they are opposites. These interests show that she has age appropriate ones as well as some developmentally lower interests.
11. She loves make-up. This developed all on her own, since I don't wear it. She owns more lip gloss, eye shadow, and make-up brushes than I ever have.
12. Even when things are hard, she carries on. Hospital stays, increases in medications, surgeries, or times of being home bound, she powers through them all. She may have some fears and short periods of sadness, but Jaycee goes through adverse situations like a true champion.
13. She says the sweetest prayers. Jaycee utters out a mixture of babbles and real words to talk to God every day. She prays for some of her favorite people in these prayers. I feel honored when I am mentioned.
14. She cares about her friends. She asks about them and is concerned about them if they get hurt.
15. Jaycee loves to video chat with family and friends. With her limited speech, video chatting is important for the listener to see her gestures and signs.
17. Jaycee is fearless about amusement rides. While I scream on a coaster, she is all smiles and laughs. Because of her heart condition, she hasn't done the big coasters, but I am sure she would enjoy them if given the opportunity.
18. Jaycee loves to rub on my fingernails. She takes her hand and gently grazes her fingers across the edge of my fingernails. She has done this since she was a toddler.
19. My daughter loves to sing. Most people can't make out any of the words that she is saying, but I love to hear her sing. A few years ago, Jaycee was silent, so her singing is such a gift.
20. Jaycee thrives on routine. This can be good and bad. Honestly speaking, I thrive on routines as well. She gets this trait from her mom.
21. She loves like no one I know. Seriously, she is the most loving and accepting person. Her loving nature challenges me to do better. I am grateful that I get to be around her love everyday. There are plenty of hugs and kisses in our home.
On World Down syndrome day, I celebrate my daughter, her life, and the wonderful person that she is. I hope her Down syndrome fades away for other people too, and they can see her.
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