What Down Syndrome Is NOT

October is Down Syndrome Awareness Month and, if you have a friend with a family member who has Down syndrome, your Facebook or Instagram may become flooded with informative posts about what exactly Down syndrome is. 

However, you don’t often get to read or understand what Down syndrome is not. 

I was 23 years old when my first son was born. Like a lot of babies, he was born looking kinda funny. His right lip was huge; his face was red and swollen; and his eyes were set a little farther apart than what we were expecting. We attributed all this to the rough journey he had taken in arriving . . . I mean who wouldn’t look funny after traveling through the birth canal for over an hour? When the pediatrician came in the next day and promptly ordered a genetic test, my heart sank. 

Down syndrome? Could my precious little boy possibly have that? My husband and I both secretly began researching what it entailed to have a child with Down syndrome before we found out a few days later that he did, indeed, have it. 

One mommy forum I read during my intense research said that Down syndrome was the “Cadillac of disabilities” — meaning if you had to choose a disability for your child to have it should be Down syndrome. What?!?

Down syndrome is NOT the Cadillac of disabilities.

The word syndrome entails an abnormality or defect in a metabolic or physical system that leads to downstream effects or multi-system issues. In layman’s terms, that means each child with Down syndrome is different just like any typical child is different from the next typical child.

My son has hypospadias, a rare lymphatic malformation on his lip, hypothyroidism, and mild obstructive sleep apnea. Not all individuals with Down syndrome have those medical conditions and some individuals without any disabilities happen to have these particular medical issues. Many kids with DS have heart defects; many do not. Many have to have their tonsils taken out at some point; many do not. One family I know has to blend food together in a blender for every single meal because their daughter cannot chew. Not every child with Down syndrome has trouble chewing food; come to my house and you’ll see that my son raids the pantry every day!

With all this being stated, there is no disability that is a “Cadillac.” Because each child, regardless of his abilities, presents his own sets of challenges.

Each child, typical or not, should never be compared to a car. Medical, physical, emotional, behavioral, or a mixture of all four, kids are kids and parenting is tough!

Down syndrome is NOT the end of the world.

When Harrison, our first son, was diagnosed, my husband and I were shaken. He was our first kid, and we barely knew what we were doing, so when we read up on all the different medical issues that could eventually present in him, my husband finally stopped us, opened up the Bible to Psalms, and began reading aloud.

We realized that the earth was still going to turn and that we should be rejoicing in the beautiful, not funny looking, life that we had been given (although it was OK and good to grieve . . . you can read more about Harrison’s diagnosis here).

Down syndrome is NOT something that should be pitied.

“I’m sorry” and “Wow, your life must have been completely turned upside down” and “You’re done having kids, right?” are just a few of the common comments I get when I’m out and about with Harrison. I receive a lot of pitying looks when I take my two boys to the grocery store (or maybe it’s just because I have two busy boys plus I’m pregnant?!). Having a child with Down syndrome may be challenging, but it’s not something worth being pitied over. I love Harrison: his unique smile; the way he says “cookie;” his vast knowledge of sign language; and the way his face lights up when his daddy comes home is not something to be sad and upset over. 

Down syndrome is NOT debilitating.

My son is a vivacious, busy, busy boy. He throws toys and books off the bookshelf, bites his little brother, loves going to preschool, goes strawberry picking, steals other kids’ snacks, is stubborn when it comes to leaving the playground, and gives the absolute best hugs. He is not weak or sickly.

Yes, he does have a lot more doctor appointments compared to typical children.

Yes, there are times when he’s not himself and just needs to watch Blue’s Clues until he gets over his croup that led to stridor because of his tinier-than-average airway.

Yes, I do get overwhelmed with sadness at random moments when I see him struggling with something that his younger brother can already do. But, overall, individuals with Down syndrome are not confined to their bed all day. They hold jobs in the community, bring families together, and, most importantly, they remind us how to love.

Since my son is only three years old, I’m still learning what Down syndrome is and what Down syndrome is not.

Each day, ever since he was born, my son teaches me that life isn’t all about me. Each day, he teaches me patience (ha . . . what kid doesn’t teach that?). Each day, he teaches me what items around the house I should probably keep out of his reach. Each day, he reminds me, with lots of hugs and kisses, to show compassion, grace, and love to every individual. 

What have you learned about Down syndrome and what it is or is not?