For my fortieth birthday I invited my three sisters to my home, not for a celebration but to talk. In the living room of our apartment, I told them that I had wanted so much to be a mother by this point in my life, that my husband and I were going to keep trying for one more year, and that we were also thinking about adopting a girl from China. I wanted to know what they thought of that. My sisters listened and promised their support. Amy leaned toward me with a tender smile and said, “If you have a baby, I will help you.”
About a year and a half later, our son Theo was born. In the early hours of the second full day of his life, our healthy baby boy had a seizure. They could not tell me then exactly what had happened. At first, they thought Theo might have had a stroke, which I’d never heard of as happening to infants. “Is he going to die?” I asked the attending physician. “I don’t think so,” he said carefully.
As I stood stock still over my son’s bed, the night nurse had to get my attention to look into my shocked eyes. “Talk to him,” she said. “Say his name. Touch him. Let him know you are with him.” I looked down and put my hand on the still little swaddled body.
As soon as it could be arranged, Theo was moved to a well-known children’s hospital not far away. We followed a few hours later, after packing—my husband was staying with me with a foldout chair for a bed—and the discharge procedures. Technically, I was not supposed to leave so soon after a C-section, but there was no question about that. Then there were painful, brief phone calls to share the news with our families.
We had discouraged visitors the first two days because I felt so awful. The one exception was my youngest sister, Monica, who had been with us for the birth. “I hate to say this,” Monica reported to my parents on the phone, “but he’s more beautiful than my babies were.”
The next day it was such a relief to see my sisters Amy and Adriene coming toward us in the family waiting area. They radiated love and concern but not frantic worry, giving me the feeling that everything would be all right. My parents arrived in the afternoon after the six hours’ drive from their home.
My sisters really helped us get through that day. It was hard for us to concentrate on anything or to take in information or figure out what to do next. My incision was still very sore, and my milk was starting to come in. We had to contact the hospital’s lactation specialist and arrange for me to start expressing milk for Theo to have later on, since they weren’t sure how soon I could nurse him again. We met with the director of the pediatric ICU, who gave us an update. They were running various tests and wouldn’t have answers very soon. Theo was being provided with nourishment through the IV as well as medicine to prevent more seizures. In case an infection had been the cause, he was also on antibiotics.
As we waited in the pediatric ICU for an opening in the newborn intensive care unit, a popular song seemed to play over and over on the radio: “It must have been love, but it’s O-ver now . . .”
A hospital social worker answered my questions and walked with me back to the ICU. “Do you have a good support system?” she asked. I said yes. She said, “I wouldn’t have believed it if you’d said anything else,” pointing ahead to where my parents and sisters stood in a circle, heads bent, around my son’s rolling bed. “Look, I see a cloud, a fog of love around him.”
On the second day at the children’s hospital, we learned more. The pediatric neurologist and another doctor sat down with us in a family room to tell us what they knew about what had happened.
If my husband and I were beginning on the well-known stages of grief,1 it was clear that the first stage, denial, was not possible. The cold blue eyes of the neurologist, fixed on me, precluded any attempt at escape from the hard reality she had to convey—her gaze cold not from lack of personal warmth but from a necessary emotional distance.
Theo had had a seizure as a result of a sudden drop in his blood sugar, which had happened without warning. The reason for the hypoglycemia was unknown. Newborns at risk for this were usually small, under five pounds, or heavier than usual. At a little over six pounds, Theo did not fall into the usual risk category. I was assured that my age was not a factor nor anything I had done during pregnancy. Both Theo’s father and I were tested for genetic factors. We know no more about it today.
An MRI showed that part of Theo’s brain, the occipital lobes at the back of the head, were not showing neural activity, so this area looked dark while the other areas lit up with neurons firing. It was expected, though, that a future MRI might appear to show a fully recovered brain, by showing restored activity. But this would not mean healing. Since the MRI technology was fairly new, there was not a lot of research available on outcomes after neonatal hypoglycemia. But based on the small number of known cases, they expected Theo to have significant problems in various areas.
Theo’s blood was tested every four hours, drawn from his heel. He would scream at the prick of the needle, and I would cry, too. The best times were when I could sit with him. I loved holding him close to me and nursing him. At least this was something I could do that was good for him.
It seemed to me that I ought to touch him a lot as the night nurse at the other hospital had told me—that I ought to rub him on the back of his head where the injury to the brain had occurred—but the thought kept coming that if I did, the back of his head would cave in like a rotten peach. This made me feel horrible, like I wasn’t able to care for him the way I needed to.
Touch, though, became an important aspect in Theo’s therapies and in observation of his reactions. I liked the early intervention exercises that involved rocking or “log-rolling” the smiling baby from side to side, just as I would rock teenage Theo by the shoulder and hip to get him up in the morning.
After nine days at the children’s hospital, we took him home. I was nervous and seemed to have forgotten everything I had learned about caring for infants from extensive babysitting and family experience. If I was quick to find fault with myself, others were ready to find fault with me also. I would say something about “the baby” and then jump when my husband barked, “Don’t call him ‘the baby’! Call him Theo!” My father ended their first extended visit with a stern “Smile at that baby!” Did that mean I’d been showing my son only a strained, worried face? How would this affect his future?
My sister Amy, who had promised she would help if I became a mother, made my son a big part of her life. While I ached and wondered if I loved my son enough, Amy once actually asked me, “Do you think I love him too much? I love him so much!” She looked so worried that I told her that unless she was going to kidnap him there was no problem.
I’m writing this2 on my fifty-eighth birthday. Theo is 16 and taller than me. I’m a single mom now. I’ve wondered if I’ve been doing the right things; compared myself to other parents, compared Theo to other kids, tried to give that up since every child and family is unique, but took comfort from others’ success stories; felt guilty, as we say in my church, “for what I have done and for what I have failed to do”; wracked my brains over him, prayed for him, advocated for him. I don’t know what shape my son’s adult life will take, but he will need help and support. “You worry too much,” Theo tells me.
When it comes to love, I think it doesn’t even make sense to ask: Is it too much? Is it enough? Is it the “right” or the “wrong” kind? We are not perfect, but love is. Love is unmeasurable and beyond our understanding, but we are drawn to its light and warmth in spite of the suffering and doubt and grief that life brings along with it. We don’t know how to love, but maybe love can teach us.
Elisabeth Kübler-Ross’s stages of grief: Denial, Anger, Bargaining, Depression, Acceptance
First draft, a few years ago
Annette, this is so beautifully written. I think every parent, at least once, has wondered if they loved enough or in the "right" way. I can't wait to read your next blog. I will be sharing this far and wide! Thanks for sharing with me.