This is what it’s like to live with Down Syndrome
In the middle of the night…I hear nothing. In the morning, there it is again…nothing. Nothing except the faint, slow sound of my son breathing. Breathing without struggle; breathing without interruption. After three years of fighting to catch his breath, Addison finally has what we all take for granted.
Three years ago, I sat in the frigid, sterile room of the NICU holding my son, trying to warm him and create as normal an atmosphere as I could considering we’d both just had major surgery. Above the quite humm of the florescent lights, I heard a slight gurgling in his nose. There was no mucus or any signs of a cold. I pointed it out to the pediatrician, and she told me it was nothing. That bubbly sound - way up in the bridge of his nose - rocked the foundation of my life, impeded my son’s growth, and dove me near the depths of depression and complete physical exhaustion.
I can tell you recipes for nasal sprays; remedies for allergic reactions; enema concoctions; and positions to prop children to help them sleep. And with Down Syndrome, there are these physical “things” that are hard to get around until the child’s body grows: a larger tongue, sluggish immune system, and smaller ear tubes, to name a few. The moment Addison snuggles into bed, his tongue tilts back just ever so slightly, and that tiny bit of mucus mulling around in his airways, blocks a good percentage of air. Imagine what it’s like to be on the verge of suffocating. Now imagine this all night long, when all you want to do is get into your dreams and under the blankets. Add a cold on top of all this, and it’s a breathing becomes gasping. To give an absolute formula to anyone on how to help a child breath is like trying to gather the rushing waters of a river into a bathtub.
Above all the cures, I will tell you the one that works. In fact it is the only cure, I can put my stamp and can confidently say all other professions will join in on with high approval ratings: Gratitude. It’s easier said than done. Try being grateful for EVERYTHING. That includes the hole in the ceiling, the ex, the cockroach scurrying across the floor, the food in the fridge, the gas in the car, the cranky boss, the air we breath, and yes, even the sleepless nights.
By unearthing the gratitude for everything, I’ve found a treasure chest of wisdom or sometimes just an AHHaa moment, where I can then move on more clearly to the next step or the next breath. Those nights where I hear nothing are the sweetest, most jubilant sounding of trumpets I could ever toot my horn at. And as we breath more easily, we can all get on with the other important things in life like painting the bathtub.


