At age 18, my daughter stands under 5 feet tall. Her brown, wavy hair falls just below her shoulders. Most days, she prefers her hair to be worn up in a ponytail. Her shoe of choice is crocs. With no laces or buckles, they seem to work well for her. She adores the color pink and gravitates towards clothing (and crocs) in that shade.
Her giggle is infectious. She laughs, sings, and rocks to express her happiness. She blasts music from the band, Skillet. Her teenage brother begs her to turn the volume down as she yells out lyrics to any Skillet song.
She loves to shop as long as it’s before 4 pm. After that, her stamina drops. When we enter the local grocery store, she likes to be in charge of the list. She checks items off as I place them in the cart. If I throw something into the cart that’s not on the list, she is frustrated that she has nothing to mark off. She lets me know that I messed up!
Cassandra Haeuber Photography, Facebook
On Sundays, she loves attending church with our family. She knows the general area where we sit and can lead the way there if she enters the sanctuary first. During worship, she sings and rocks back-and-forth in delight. If the pastor makes a funny noise in the sermon, she is bound to imitate it.
At home, she enjoys helping in the kitchen. She can cook her own eggs from start to finish; a skill she is proud to do. Her chores at home include: assisting me with changing bed sheets, feeding the cats, cleaning out the dishwasher, Swiffer mopping the floors, and dusting.
I hear about her cousins often in her conversations. She loves to talk about them, see them, and send one of them a text with help. She says her best friend is one of her cousins. I tease her that I am her best friend, but she assures me that I am not. Once upon a time, when she was around 8 years old, I indeed was her best friend.
My daughter has a crease straight across the palm of her hand and short, little fingers. Her ears are set a bit low too. The bridge of her nose is quite flat making it a challenge to find glasses that fit well. Her tongue is generally noticeable to others as it often is out more than most people. On her chest, she bears two overlapping straight scars, one for each open-heart surgery. If you recognize the characteristics from this paragraph, then you have probably guessed that my daughter has Down syndrome.
March 21st is recognized as World Down syndrome day. The date 3/21 is symbolic of the 3 copies of chromosome 21 found in those with Down syndrome. It is a date set aside for global awareness of the syndrome. Because Down syndrome is a special part of our lives, I strive to share a bit about our family.
When most people take a look at my daughter, they see Down syndrome. Even if someone can’t name her diagnosis, they are probably aware that some kind of diagnosis is present. She looks a bit different, and it is that, I am afraid, that people tend to focus on.
I like to remind people that she is so much more than the characteristics that the extra chromosome brings. She is now a young adult with a full personality, likes/dislikes, and opinions. She is more than her chromosome count.
If people spent time with my daughter, I would hope they would see Jaycee for who she really is.
Evana is a wife and mother of two children. Evana is a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
