“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.
Heads up: *October is Down Syndrome Awareness Month*