October is Down Syndrome Awareness Month, 31 days in which members of the Down syndrome community focus on awareness, advocacy, inclusion and respect for all individuals with Down syndrome. My daughter was diagnosed a few hours after birth.
This is Abby. She’s four. She’ll tell you “I’ve had four birthdays.” She’ll also tell you she’s going to have five babies. Good luck with that, kid.
This is Abby. She has trouble with abstract thinking. She usually understands your words but not always your intent. No matter how many times we go over “we’re going to listen to our teachers and do what they say” before dance class, we inevitably end up with crossed arms, pouty face and an outright refusal to even move. The other moms are trying to be nice when they tell Abby how cute she is. I just want to run out of there.
This is Abby. She goes to speech therapy before preschool several times a week. She has a respectable vocabulary but is a little hard to understand. If you don’t quite get what she’s telling you, she will patiently repeat herself no matter how many times it takes. However, if you give up on her or show any kind of frustration, she’ll yell at you to “LEAVE.”
This is Abby. She’s a big sister. Her little brother adores her. A. Dores. Her. Laughs at her every joke, copies her every move, follows her everywhere. She… usually couldn’t care less.
This is Abby. She can count to 20. She can spell and write her name. (But she thinks every combination of letters spells ABBY.) She can sing nearly every song from Frozen, basically any nursery rhyme you can think of, and of course the Meghan Trainor song “I’m all about that bass, ’bout that bass, NO SHOVEL.”
This is Abby. She’s surrounded by a community that adores her. We can’t walk into preschool without one of her little friends running up for a hug. Nearly all the kindergarten teachers in her elementary school (that she won’t officially attend until next year) know her by name. Family, friends, extended family, friends of family, friends of extended family, work friends, friends of work friends… you name it – everyone knows and loves her. She’s got a local Buddy Walk team that, in 5 years, has raised approximately $25,000 in her name.
This is Abby. I could not be any prouder of her. Even when I’m frustrated beyond belief.
On the days I just want to scream, I think back to the floppy baby I brought home from the hospital. The sleeping 12-day old I held as her therapists told me she was already severely behind. The one who worked so hard to hold her head up, to roll over, to pick up her toys, to clap and crawl and walk and climb and run and learn her letters and speak and have an opinion of her own. She worked so hard to get to all of those milestones…
Today’s frustration? That’s just us working toward another milestone.