| The Ups and Downs of Down |
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Since Hallie arrived, I’ve been positive and hopeful. Believing that she was sent from God and was no accident, I welcomed her cheerfully. I found pride in being her chosen mother. (“Every woman can have a normal child. Only one in 700 has a child with Down syndrome.”) I threw away notions of mental retardation and worked to develop her potential. I stopped looking at what other babies were doing--how quickly they were growing, how soon they were sitting. I discarded ideas of “normal,” and adopted a “normal for Hallie” standard. When people asked “How is she doing?” as if she shouldn’t be doing anything a normal baby would do, I’d simply say, “She’s doing great for Hallie.” I started thinking of sassy phrases to teach her when she got older, such as, “When you start out Down, the only way to go is up,” and “Don’t bug me, I’m a little Down today.” In short, I’ve been as up as a Down mommy could be. Then the other day, Hallie wasn’t feeling well when we went to her therapy session. Anticipating that she wouldn’t do any work, I planned to talk with the therapists about some concerns. And that’s when I heard words I didn’t want to hear. Thinking she was doing better than the average child with the syndrome, I got smacked in the face with reality: “Her muscle tone is lower than we’d expect.” “I’m concerned about some feeding issues.” “She’s very disorganized in her body when she eats.” With each little revelation, my heart sank deeper. By the time we left, Hallie wasn’t the only Middlebrooke who was down. In less than an hour, our beloved therapist had taken away my vision. Without it, my hope began to perish. All the way home, I hurt. Had I done enough to help her train and develop her muscles? Was I fooling myself thinking that she would exceed her “potential”? In the world of below-average children, she was below average--why? Later I realized I had experienced “the crisis” that many parents of children with Down syndrome report having when their children arrive. I could have done without it, but it gave me new fervor to change “reality.” I picked up Hallie, “organized” her body and held her tight. She’s going to make it. The only way she can go is up. |