My Name Is…

My name is Tessa.


I was born with Down syndrome.

I am not Down syndrome.

I am NOT identified by my extra chromosome.


My name is Tessa.

I am not a “Downs kid” or “that Down syndrome girl.”

I am a person…with one big beating heart.


My name is Tessa.

I have feelings and emotions just like you.

I am expressive.

I have good days and I have bad days.

Sound familiar?

Family Documentary Photography

Photo credit: Studio IV Photography

My name is Tessa.

I am complex and beautiful.

I am simple and sweet.

I am way more than you think you know.


My name is Tessa.

I am not special because of my chromosomes.

I am not a mistake.

I was perfectly created to be me.

Family Documentary Photography

Photo credit: Studio IV Photography

My name is Tessa.

I am smart.

I am funny.

I am capable.

I am NOT suffering.

I am strong.


My name is Tessa.

I have family who loves me.

I am accepted, not judged, by my friends.

Credit: Kelsey Jean Photography

Credit: Kelsey Jean Photography

My name is Tessa.

I am NOT a punching bag for the narrow minded.

I am a positive influence in this world.

I have a lot to offer.


My name is Tessa.  And that is what I like to be called.

***October is Down Syndrome Awareness Month.  We are all about using People First Language–people first, diagnosis later.  People first.  It is simple.  Identify people for who they are, not by what they may or may not have.  This month, I want to encourage people with Down syndrome to represent themselves by using the hashtag #mynameis in hopes to show the world that those with Down syndrome are people first; people who like to be identified by their names, not by their 47th chromosome.***

And a little throwback fun for you…

Dear Tessa, You Totally Rock

“Mom, you pway wif me,” you asked as I was just leaving the bathroom.  “Of course.  What would you like to play?” I responded.  “Ummm, [as your index finger taps your chin], same-same,”  you said.  Which in our world means the game Memory.

So I sit down for an unconventional game of memory; where the rules were yours to make, and I was expected to follow.  So I did.

“Good job mom!  You totally rock!”  Your little raspy voice spoke those words to me so clearly after I found a matching pair.  Never mind the fact that I had just found that same pair seconds before and you told me, “Noooo. Not same-same.  Turn over.  Try again.”  Laughing hysterically because you knew I would turn them back over anyway, even though we both knew that it was a legitimate pair.

You weren’t feeling well today so I kept you home with me this afternoon, but I try to sneak in a little play therapy where I can–especially since your speech is on point right now!  In the extremely rare times that it is just you and mom at home, I watched you closely as we played your game and I listened to you even closer.  We had a conversation about school and your friends there.  We talked about the messy toy room that we were sitting in and what we wanted to make for supper.  Then you started singing songs from Tangled; acting the scenes straight out of the movie like there was not a soul in the room.

Much to your dismay, I eventually laid you down for a nap because you needed rest.   You cough so much more in your sleep when you are sick, so I stayed with you and kept you upright until you were out.  In my arms was my four year old curled in the same way you used to when you were an infant.

And in these moments where you long for me most, I remind myself that there is absolutely nothing that I would change about you. Nothing.  Not one thing.  I love your little raspy voice and sassy attitude.  I love your short stature that is bursting with an enormous personality.  I love the way you get mad when you don’t get something on the first try and when you call your dad a silly goose or a stinker.  I adore your wide open heart that practically hands love out like free candy.


None of the therapies, doctor appointments, hospital stays, delayed milestones, frustrations, heartaches, headaches and sleepless nights will ever compare to your victories over each of these necessary factors in your life.

This is what being your mom is all about.

Everything your extra chromosome has brought to the party has been well worth it.  Without Down syndrome my life would have been less dramatic, no doubt, but far less enriched as well.  Without it, I would not understand or appreciate the road less traveled.  Whatever I did to deserve a “child like you”, I am so damn glad I did it.


All of these warm and fuzzy feels were brought on from that one precious sentence.  “Good job mom!  You totally rock!”  No, Tessa. You totally rock.

Thank you for just being you.  Yesterday, today and hopefully tomorrow too.

Love, Mom

Heads up:   *October is Down Syndrome Awareness Month*