That One Simple Phrase

“…they’re just so happy all the time; not a care in the world. I envy that…”

She said this to me yesterday morning in casual conversation; referring to people with Down syndrome like my seven year old. She was sweet as she spoke, and I could tell she was genuinely coming from a good place.

My mouth wide open, unable to respond, I briefly closed my eyes and took a moment. I know myself and I likely wouldn’t have said anything if I wasn’t getting my teeth cleaned so I withdrew to my comfort zone where I process and write it out later. I also just got home from a retreat for moms of kids with Down syndrome, and I’m feeling a little soap-boxy and inspired.

This phrase…sigh. The “they’re always so happy” phrase. If you have a child with Down syndrome, you probably know what I am talking about, and maybe you can relate. It doesn’t offend me, I swear. Believe me, there are far more harmful perceptions than this. It does, however, carry a certain sort of ickiness that implies individuals with an extra chromosome are angelic. A common blanket statement that groups all people with Down syndrome by suggesting they live their lives blissfully unaware of knowing anything other than happiness. That they carry on without having real feelings. I’ve never heard anything so well-intended that makes me grimace as much; and yet I hear it often. The frequency of this sentence tells me how much farther we have to go so I’ll share my two cents.

Having Down syndrome has not shielded my daughter from experiencing a wide range of emotions. It also has not hindered her ability to process them either. I know this to be true because I have fought back tears as she cried in my arms when she felt left out. I have watched quietly from the other room when she tells her little sister she is annoying her at breakfast. I listen as she expresses her frustration every morning when she attempts to tie her shoes independently. I’ve witnessed her prideful victory dance after she whooped my butt in game of Trouble. She has screamed with excitement when she received a birthday party invite from a friend only to be incredibly jealous when her sister got an invite of her own a few weeks. And if someone ticks her off, you better believe she will let them know.

My daughter is compassionate and shows empathy toward others accordingly. She knows the weight that words can carry, and she absolutely feels it when they are used to hurt. She cries when she is upset, and sometimes she yells when she is mad. She laughs when she finds something funny and hugs when she feels the need. She says things like “I love you,” “you’re the best,” “you’re driving me crazy,” and “you’re a meanie-head,” and she means all of it.

An extra chromosome doesn’t mean her thoughts and feelings are the exact same as any other person with Down syndrome. She is not a carbon copy of someone else. That forty-seventh chromosome doesn’t make her live in a state of constant happiness. Nor does it mean she is always nice or that she never makes mistakes. She, too, learns life lessons the hard way and apologizes when she has let someone down. She certainly is not happy all the time, and we do not expect her to be.

Like our other children, we encourage her to express herself any way that is comfortable and share how she is feeling. To say when she feels hurt, angry, abandoned, sad, frustrated, annoyed, uncomfortable, joyful, bored, amused, confused, nervous, excited, ashamed and of course when she is happy.

She is a real person who is capable of understanding and experiencing emotions, complete with her own set of thoughts and views on life. Just like you, me and every living human being, she has feelings and they are valid. To suggest anything otherwise devalues her and everyone else that this phrase is intended for. We can’t possibly envy something we all experience, even if it may translate differently from person to person.

Appreciate her honesty and genuineness. Acknowledge her feelings and know that she is aware of the world around her. None of which has anything to do with the fact that she has Down syndrome.

Dear Tessa: Happy 7th Birthday!

Dear Tessa,

My bedroom door slowly opened up this morning while I was feeding Dax. Your face peaked around the corner while you held onto the door handle. “Is it my birthday today mom?” I smiled and nodded my head yes. “Yay! It’s my birthday! It’s my birthday! I love you!” I watched as you jumped up and down and gave your daddy a great big hug.

You excitedly climbed up in my bed and laid down next to me, describing the kind of birthday cake you wanted. First it was Trolls, then emojis; ultimately deciding on a giant Frozen cake topped with whipped cream and ice cream. The good news is that your dad already bought you an ice cream cake, complete with whipped cream topping. Technically a frozen cake but without all of the glitter. We opted for this route because as you’ve told us before, you’re “not a big fan of cake.” And we all know ice cream is the best way to your heart.

Happy seventh birthday. How in the world are you seven years old? I swear I just brought all six pounds of you home from the hospital yesterday.

First off, I am just going to go ahead and own that I dropped the birthday ball this year. August 15 snuck up on me this year, and I failed to plan a single thing for your special day. We will celebrate with a few of your friends next week. Which means I had to slightly let you down today when you asked what time your surprise party would be. Seriously girlfriend, you can’t go expecting surprise parties until you’re twenties or thirties like the rest of us.

I know kids grow faster than parents realize, so it shouldn’t surprise me but it always does. Every birthday arrives, and I’m all like hold on a hot second…you can’t get any bigger, ok? I try to convince you to stay the same age just one more year, but you won’t have any of it.

Seven feels like a big one. Still a kid, but becoming more of a big one. Your baby face I smooched on for so long now has less chubby cheeks. A few freckles now rest below your piercing blue eyes. The short bob that frames your face complements your bold personality. Your smile is sporting two brand new front teeth that are just about all the way in, and the hot pink glasses add the perfect amount of sass. Country music has recently rocked your soul thanks to Chris Janson. Expressions and opinions about the world you live in are more prevalent as your interests broaden.

While so much of you is changing, a lot remains the same. Your love of milkshakes and your beloved “Malt Man” (AKA Dad) is as strong as it gets. Books are still your favorite way to relax. You appreciate a good Caesar salad. Music and Netflix could entertain you all day long. As of yesterday, ranch dressing is still your “jam.” And my favorite… pretending to not know how to do certain things just to get mom’s help. The perfect blend of old and new to ease the bittersweet stages of watching you grow up.

In a few weeks, you will start second grade. A socially defining year for kids your age. Real friendships begin to form as common interests intersect at recess and lunch. As your mom, I wonder what these friendships will look like for you. Will you be loved and accepted for all of the wonderful things that make you, you?

My hope for you, even more than making friends, is that you are never afraid to be yourself. That you continue to explore the things that bring you happiness. Most importantly, that you remain kind when others may not be in return.

Happy birthday sweet Tessa Bug. We love you lots and hope you enjoy your special day.

Love, Mom (and Malt Man, too) ❤️