It’s okay to say, this stinks!

  • By Kim Torres
    Down Syndrome Association Houston

August 28, 2019

This weekend I got to host my first Coffee and Confidence session. It was a wonderful morning filled with sharing raw emotions. I left feeling connected to four new families in the Greater Houston Ds community. My favorite part of the session was actually a discussion on one of the most taboo subjects in the ds community – what I call my, “I hate Down syndrome days”. Now before you judge me as a bad mom or the world’s worst executive director, let me explain what I mean. What I mean is that Ds, as a diagnosis, is not always unicorns and rainbows. There are days where because of Down syndrome my life, my son’s life, and my entire family’s life is harder. These are the days where I find myself having internal discussions about hating the fact that my son has Ds. Not hating him, but hating the fact that things are hard. These are typically days filled with doctor appointments, or professionals telling me how much my son doesn’t know, or days where stubbornness seems to be the only trait my son wants to practice. After years of not talking about “I hate Down syndrome Days” (we will call them IHDs Days from now on) to anyone but my husband and closest friends, I started to talk about “I hate Down syndrome days” openly at presentations, workshops, and social events. Why? Because it is my belief that most of us have them. Maybe hate isn’t your word, but there is some emotional label that each of us uses when we blame Ds for struggles or stresses. For me it is IHDs Days. Talking about them makes me a better mom, It connects me with parents in the Ds community more intimately, and it is truthful to the whole range of emotions that come with raising any kid, even ones as joyful as ours.

So circling back to my Coffee and Confidence moment, I can honestly say that I could see a bit of relief in the eyes of the parents I spoke to that day. As if it was reassuring to hear that Ds isn’t always the greatest thing since sliced pizza. I hope they took that moment with them and continue the circle of sharing. It is okay for today to stink. Tomorrow might not. That is the beautiful thing about life.