An excerpt from Purple Stew

"It’s been six years almost to the day and I feel as if I’m right back where I started. Sitting beside my daughter who is hooked up to more wires and machines than I can count while people in pastel cottons scurry busily, brings back more emotions in me than I wanted to remember. I’d worked hard to forget the terror, the confusion and the anguish of those first days when I realized I might never know the baby we wanted so desperately. After two miscarriages, to have come so far only to lose another child; I was just as afraid of losing myself to the overwhelming feelings of despair as I was of losing her.
Erin entered this world and she was perfect. She still is perfectly Erin but at the moment of birth she also fit my ideal. When they laid her on my stomach, she sang a cute little “ah” with her first exhale. She scored nine, nine, and ten on her APGAR ratings and as a mark oriented teacher, I was proud and relieved.
By the next morning, my image of perfection was not being realized. Because of a staff shortage, there was no one to help me learn how to nurse my new daughter and I refused to give her a bottle. Kevin remarked that her breathing was irregular but the doctor's called it "periodic breathing ...quite common in preemies” (Erin was thirty-eight weeks and eight and a half pounds.. not quite preemie standards!)
I never really registered Kevin’s concern at that point. Perhaps it was the thirteen hours of difficult labour. But I think I was still so enthralled that she was here! My little Erin with perfect fingers and toes, chubby little cheeks and a button nose. She was everything I had dreamed of . I held her and changed her; rocked her and sang to her. Early in the pregnancy I had purchased a tape of Disney lullabies and learned three of them (Baby Mine is still a family favorite) and I was overjoyed to be finally using them. I was thrilled with all the little details of my new mom routine: memorizing her face and hands, inhaling her new-baby scent, choosing an outfit for her first picture. I was oblivious to anything that didn’t fit into the perfect little world in my head.
I never noticed a thing...except I couldn’t get a handle on the nursing. Erin wouldn’t latch on and when she did, she couldn’t sustain it. But the hospital was busy and noisy and I figured it was my fault. By Friday, she still couldn't nurse and was developing jaundice. I consented to water to keep her from dehydrating under "the lights".
Then came early morning Saturday feeding. It took a nurse and I one and a half hours to get her to latch to no avail. Erin was extremely lethargic and neither of us clued in that there was more to it than that. It was the last time I saw the Erin of my dreams. Later that morning the nurses found her blue in the nursery, physically stimulated her to get her breathing again and placed her in NICU where a battery of tests would begin. I then took a good look at my real daughter Erin. And I discovered that she was ill and no one could tell me why.
Everyone always assumes that their child will be like everyone else's. According to women I've talked to, everyone also thinks at some point "what if". But there is no way to prepare you for the reality of a child with special needs. It truly is an overwhelming experience. All along, you have fantasized and pictured yourself with your newborn; troubleshooting many roadblocks before the baby was even born to be better able to cope when the need arises. Then the entire situation changes. Not only are all your fantasies null and void, the pictures which take their place are often depressing. I started to remember when I was in grade school and called the kids who went to a nearby vocational school "nummy­nums". Why? That's what everyone else called them. When I was growing up, the boy next door had Down’s Syndrome. He was older than me by about ten years and much bigger... or so it seemed to my six year old eyes! We often played together: baseball with a large green plastic bat, bike riding up and down the sidewalk on our half of the block or sitting on the porch and talking. But I was always afraid of him. Sometimes he would hurt me-- not purposefully but as a toddler does out of excitement for the game. I insisted that he sit on the bottom step of the porch while I sat at the top out of harms way and close to the door so I could run in if necessary.

Yet I still chose to play with Donald. I never told him to go away when he came over. I remember scolding other kids on the block for being cruel to him. But I NEVER went to his house and invited him out to play.
When I was in my late teens, my boyfriend had a little brother with Cerebral Palsy and low vision. His speech was severely compromised and at eight years old was struggling to walk with braces and crutches. He preferred to scootch around on his bum. What I remember most about Ian is his smile. It covered his entire face and you couldn’t help but respond to it. His mother told me that I should work “with kids like Ian” and I was immediately flattered and repulsed by the suggestion. I told her I liked dropping by and playing with Ian on my terms when I felt like it but I couldn’t see myself doing “that sort of thing” from nine to three everyday , ten month a year. I was sure I didn’t have that in me. I also thought about my reactions as an adult to "challenged" people--mental or physical. Curiosity, pity, even disgust. Would I feel that for my own baby? Would others?
Then came the grieving. Erin would not be the ideal I had pictured. The rational part of me recognized that no child would have been. Your children are their own people. Even in the womb they move when they want to, not when it is convenient for you. At some point, in months or years, Erin would have expressed her own opinions and needs and I would have deferred to her personality and allowed her to develop it. But this was different. It's not so much that I wasn't ready for her to be her own person so much as I was afraid she wouldn't fit my loose definition of a person: someone who learns as they grow in order to one day be self-sufficient and possibly help someone else on the same journey. Would she ever be independent? Could I be there forever if she needed me too?
And so I grieved for the child that wasn't. And I grieved for me..the parent yet to be. I had never raised a child. What if she were more than I could cope with? I don’t believe the statement "God gives special kids to special people." I didn't do anything to deserve Erin (no matter if I thought she was a gift or punishment). And surely my tiny precious Erin didn’t deserve all these tests and tubes. And so who could guarantee that I'd be enough for her. I know that I'm not alone. There is Kevin ... but he feels the same things differently. Could we do this?
Erin was also very ill. Her reflexes (grasping, sucking, etc.) were vanishing. At times, she looked comatose. They ran test after test. Nothing. And everyday I let the doctor call the shots, asked few questions and never consciously prayed.
How oblivious I was!! Every four hours day and night, I would put on my slippers and go down to NICU, take Erin out of the isolet and try to get her to nurse, sometimes for an hour!! Then I would give her back to the nurse who would feed her and put her back under the “the lights”(I had consented to formula, bottles, anything they wanted by this time---) All the time I was there I would sing to Erin, chat and joke with the nurses, anything to keep from feeling the panic rise in my throat.
She might die. It was a litany that played in the back of every moment of my being. She might die. And I smiled and joked and created a routine of mindless details.

Purple Stew by Karen Tompkins