Did you know the risk of Down Syndrome before you had him?

How I️ wish someone would have posed Down Syndrome as what it truly is instead of a negative risk. I have issues with the phrase "risk of having a baby with Down Syndrome." The word risk implies negativity and elicits similar feelings I would have when hearing the phrase “risk of cancer.” And upon hearing that our Panorama genetic blood screen came back with a high RISK of T21 when we were about 10 weeks pregnant, I️ fell apart.

What’s in a name?

Our family and friends ask regularly. In a southern world of monogram-happy mothers, aunts, and friends, this not knowing our baby's name is not too well received. Most of the child bearing women around me had a full list of names before they ever conceived. I didn't.

Is there enough for more?

Henry is our whole world and my whole heart. As our due date with our second son approaches I’m scared I don’t have enough. Though I’m excited for our family to grow, I fear I don’t have it in me to give equal love, attention, and time to this baby.

The “R” word.

I told myself that I'd never put too much stock into the utterly ignorant ways people talk. I told myself it wasn't even worth a reaction. I told myself we were above the foul ways people talk and responding to any hate speech would just bring it more to light. I tried to convince myself of all of this before my son was born. Then there was Henry; he arrived in the world and is our world. Now that word, no matter how it's used, stabs me right in the chest. It elicits a physical reaction and I can't help it.

How do you function as a mother with chronic pain?

One day I became acutely aware of how much time I had lost in a medicated state. I couldn’t recall memories others brought up. I would count my meds to see how I had to regulate use til my next refill. I noticed signs of addiction. I was afraid I would start talking myself into taking half doses before work or on days when I knew would be a struggle emotionally or physically BEFORE I noticed any signs of pain. All of a sudden I became terrified to be swallowed up by something I couldn’t control anymore.

What do you do on days you don’t feel like it?

Let’s be real. We all have days where we get up and we are just NOT feeling it. Today is that day for me. My day began when I heard Henry yelling... that’s his way of saying he is up. And it’s not a sweet angelic yell. It’s a rebel yell. A boy yell. HAYYYYYYYYYYY!!!!!!

How was your birth experience with Henry?

I’ve never had such relief and joy as when I heard him cry... it took what seemed like forever. He was weighed, measured, swaddled, and whisked away after he was briefly presented to me to kiss with a nonchalant explanation that his oxygen needed to be monitored. It was so fast and efficient and without fanfare, but I knew what it all could mean.

What do you do when your son is sick for the holidays?

A germ has descended on our household. Nothing says holiday fun like a sick toddler. It adds an extra hurdle in the high stakes obstacle course of family events. The pressure is already on for little ones to be at their peak cheeriness level at every event to enjoy the family-visiting and present-opening repetitively with equal joy and excitement for all. Is this even possible? Not for most. Not for us. Not even in optimal health. Now imagine, if you will, the final grenade thrown into the day: no nap.

How did y’all name your son?

Henry’s song seemed to have been cosmically sent to us at our exact moment of need. Isn’t life serendipitous and funny like that sometimes? I still feel the ocean of emotion I felt when I heard it for the very first time. Washed in relief. Fueled with hope. Welling pride filling my heart. A firm determination from my heels to my brow.

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