O Captain My Captain

July 5th, 2007
Down syndrome, Thomas

Sitting in the driver’s seat of my van yesterday, I turned around and saw something amazing: Thomas, so big he filled his toddler car seat. He weighs about 24 lbs now. That’s nearly six times his birth weight of 4 lbs, 3 oz.

The day he was discharged from the hospital after a 6 week NICU stay he weighed about 5 lbs. He was swamped by the straps and buckles of his infant car seat. We shoved rolled-up blankets around his tiny limbs, arranged his oxygen tubing just so, and drove him home.

For weeks I fed him by resting him on a pillow on my lap, parallel with my thighs. The soft support enabled him to relax enough to drink from the bottle. Not once did I hoist him onto my shoulder, the way I did with my other newborns. I held him only in the crook of my arm, gingerly.

Twenty months later, it’s hard to reconcile that memory with the strapping toddler before me. His body is solid with muscle. He pulls to a stand with confidence. He smacks his toy piano like an impassioned virtuoso. I feed him in his highchair now, spooning heaping loads of oatmeal into his hollering-hungry mouth. I carry him on my left hip, his knees firmly clenching my middle.

These changes all mirror the evolution of my feelings as Thomas’s mother. How fragile I felt during those early weeks. How scared I was, how vulnerable to the twisting fear of the unknown. I held my son the way I beheld my future: with uncertainty.

Not so now. These days I stride forward with eagerness, with my son heavy on my hip, his arm reaching forward, his fingers pointing the way. I will follow wherever he leads me.

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