Tomorrow is 3/21.. World Down Syndrome Day. And while I had grand plans for this post… I find myself struggling to write. It might have something to do with the nasty stomach bug that wriggled it’s way through my family this past week. Even Willow suffered through it. It robbed our bodies of every bit of energy and also apparently killed a few of my creative brain cells. So… to keep things simple I’m just going to list 21 things I thought you might like to know. Some are thoughts.. some are facts.. some are just ramblings. I’m not a doctor… I’m not an expert… I’m just a mom… who has a child with Down syndrome.
#1) Down syndrome is not a disease, sickness or ailment. It’s a chromosomal condition. While most people have 2 copies of their 21st chromosome… people with Down syndrome have 3. (Now you see why they picked 3/21 to be World Down Syndrome Day) 🙂 Down syndrome cannot be cured or corrected with surgery. Willow’s Down syndrome is here to stay. It’s part of who she is. It isn’t a mistake… it’s God’s design… just like her eye color… which is blue by-the-way… like her big sissy.
#2) Down syndrome can affect people in different ways. Physically and mentally. There is no way of telling how Willow’s extra chromosome will affect her in the future. We just have to wait and see. Many people have told us that Willow “looks like a normal baby” or that they “can’t tell a thing.” I get it. I look at Willow and see my child… not an extra chromosome. But… please know that her mental and physical health don’t have anything to do with her looks. All we know right now is that she’s darn cute.
#3) One of the biggest challenges for people with Down syndrome is low muscle tone. It affects everything from learning to walk to learning to eat. Willow has had a physical and occupational therapist working with her since she was 2 weeks old. She’s come a long way since then… but still has a long way to go. Anyone who’s held her will tell you… she’s a little floppy. But on a positive note… her floppiness makes her extra huggable.
#4) People with Down syndrome are not happy all the time. That’s a stereotype. Yes… Willow is pretty easy going… but she expresses every other emotion just like you and me. I’m pretty sure the only reason she’s laid back is because she’s the third child.
#5) Willow will go to school someday… just like big brother and sissy. The only thing that will hold her back is me… not wanting to let go.
#6) Almost half of all babies with Down syndrome are born with a heart defect. Willow had 3. A hole between her upper chambers… a hole between her lower chambers… and something called a Atrioventricular Canal defect. That’s where there is a large hole in the center of your heart affecting all four chambers.
#7) Remember those heart defects? Willow had them fixed at the Mayo Clinic in Rochester, MN when she was a month old. She had surgery on a Monday and was released that Friday. Isn’t that nuts? God is good.
#8) No… I did not know that Willow had Down syndrome while I was pregnant with her. My ultrasound was picture perfect. Even her heart looked perfect! No red flags were ever raised….. except by God….. and His flags weren’t red. I’ll write more about this in a future post.
#9) Willow likes music. She also likes my dancing. I wish my other children felt the same.
#10) The line: “God gives special needs children to special parents” makes me say “Grrrrrrrr.” I know lots of special people and they don’t have kids with Down syndrome. I do. When I first heard this statement… I actually believed it! Then I had a bad day… and the weight of that “special parent” title was too much to bear. I’m not special… I’m far from perfect… I’m just me. That’s exactly the way God wants it.
#11) Willow likes to talk… especially at 6 in the morning.
#12) Leukemia… sleep apnea…. ear infections… thyroid problems… Just a few of the things people with Down syndrome are at an increased risk of having during their lifetime.
#13) Willow is famous for smiling the minute her daddy turns his back. It’s as if she doesn’t want him to know that she likes him. I’m pretty sure she learned this from me.
#14) Willow loves it when people whistle. I think it reminds her of her Great Grandpa Chuck. I’m convinced they met in heaven. He loved to whistle.
#15) One in every 691 babies born in the United States has Down syndrome.
#16) Willow loves to pull her big sister’s hair. I call it physical therapy.
#17) Willow adores her big brother. He adores her. They are a match made in heaven.
#18) There are 3 types of Down syndrome. Trisomy 21 (the form that Willow has) is the most common… but there is also Mosaicism and Translocation.
#19) Willow is probably the most “normal” member of this family. Seriously. Have you met us?
#20) Down syndrome was named after an English doctor by the name of John Langdon Down. He’s the first person to publish a description of it.
#21) Willow is loved. Pure and simple.