It is 2:00 am when the cell phone vibrates under my pillow reminding me to get up. In a swift motion I swing my legs around and glide out of bed, barely moving the covers. My husband sleeps soundly and so does my one-week-old baby, Nichole, who sleeps propped up in her car seat in our room. I pause at the door and stare at her small shadow. Slowly I turn and exit the room, closing the bedroom door behind me. It is time.
Across the hall from my room, I lock myself in the bathroom. I sit on the cold tile floor and pull the blue Medela breast pump from under the sink. The bottles, cups, and tubes are ready, waiting for me. I am full of milk and ready to relieve some of the pressure.
I plug myself to the milking machine, the rhythmic swishing begins, and within seconds, the floodgates are open. A steady stream that never fails every time I am attached to the pump.
Why does it have to be my baby? Why do I have to be the mother of a child with Down syndrome? Why!
It never fails. Every time the pump is to my breast I cry and grieve over Nichole’s diagnosis. During the day, I have enough distractions to keep me from giving in and losing myself in despair. But at night, at night I can cry as much as I want. Everyone is sleeping. Nobody knows.
My baby has low muscle tone, which means she does not have the strength to suck and nurse. I don’t feel love for her, my own daughter, but I make myself pump. It is the least I can do for my broken baby. In the middle of the night, I can indulge freely in all the dreams that were taken from me. Lost and gone are the hopes I had, only to be replaced with fear, sadness, and an uncertain future.
The floodgates, wide open, streaming from the deepest places of my pitiful heart.
As my milk decreases, so do my tears. I turn the machine off and hold two bottles full of milk. I screw a nipple to one, and slowly dump the other one down the sink. I have so much milk I don’t care.
I return to my bedroom and unbuckle Nichole. She barely moves. I cradle her in my arm and sit on the edge of my bed. She fits so comfortably, so unlike the way I feel towards her. As soon as she feels the nipple to her lips, she latches on and begins to eat. Occasionally sleep distracts her, but it only takes a little shake of the bottle to encourage her on. When the bottle is empty, I change her diaper and buckle her in the car seat once more. She sleeps.
I return to my bed, knowing I will be waking her up once more to feed in the morning. The only baby I know that was made to sleep through the night. The only thing I even like about my child.
At least she sleeps.
I close my eyes, dreading that the next day my baby will still have Down syndrome.
In the morning I notice Nichole’s round face, soft skin, button nose and the perfect slant of her eyes as she sleeps. Involuntarily I smile and I think she is beautiful. The feeling surprises me, it is as if she had power over my heart, inviting me in, daring me to trust.
Nichole is 2 weeks old and the doctor calls. He thinks she has a life threatening condition. She is being transferred to the Mayo clinic Hospital. I hang up the phone, my hand trembling, my lip quivering. My chest tightens with guilt and fear. My legs give out and I fall on the green plush carpet. I’m a heap on the floor, and I wail.
In my anguish over the thought of losing my baby, I face the dark hole I’ve been living in since Nichole’s birth. It is deep, murky, and tight. It’s become my prison. My tears have been so abundant I will soon be covered with my own grief. My despair over what I saw as unfair would be what would cause me to drown. Not my baby, and not her diagnosis. I had been blinded by the unending tears.
In the hole, I stare at my ugly self. I have been consumed with what Nichole’s diagnosis would mean to me, bitter over the loss of dreams and expectations. I have not stopped to think about what the diagnosis will mean to Nichole. Not beyond questioning if she will always live with us, what medical conditions could come our way, or if she will marry. Even then, those concerns are about me. And I recognize then how perfect she is and how broken I am. I feel desperate for her, I need her. No, I want her.
The fear, the questions, and the anxiety move to the side. Love, joy, and peace surround me; their aroma fills me with a strength I never knew was in me. Nichole challenges me in the things I hold as important, as valuable in life. Nichole transforms me.
Nichole is so much more than her medical diagnosis. She is so much more than any limitations she might have because of Down syndrome. She is an individual, with unique gifts, talents, and abilities. Her life has meaning, it is valuable, and it is hers.
This article was originally written for specialneeds.com
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