The only thing we have to fear is fear itself.

Heard myself saying to myself, "Wow, you know, seeing a friend's child very sick and hooked up to tubes made me excessively worried about my own child who also had a virus and who has been dangerously ill in the past." Even in my train of thought I have begun to sound more and more like a Northwest Wisconsiner and less like a Chicagoan, but we're keeping to one train of thought and so I'll go back to the idea of how other people's experiences can trigger post-traumatic stress responses from me when it concerns the health of my children.

I recalled memories of when my baby was born, when some of the people around me behaved strangely. I wanted to look at those memories so that I might have compassion for myself. If those people (whom I have forgiven and did not quarrel with then except to ask them to have more compassion) showed disturbing responses to my child's situation, maybe it was within the realm of normal to be upset and to want to hold my own children closer as a result of seeing another child in distress. I should be clear, when I saw the other person's child suffering--I felt a clenching tightness in my chest and had trouble catching my breathe. I felt tears well up and roll down my face. Seeing the distant friend's child in the hospital with monitors made me imagine both of their fears and remember all of mine at once.

When my daughter was born, other pregnant mothers who were happy to be close for many months as our bellies grew at the same time suddenly behaved as if they were afraid to look at my child. One person didn't want to have to hold her when I asked because my baby seemed too frightening. It wasn't just the normal, "Oh, babies are so fragile. I wouldn't want to drop her." It was more like, "I can't hold that thing. Get it away from me. Now." People were afraid of how tiny she was (born at a hefty 8 pounds, 13 ounces and 21 inches long, but half her size after a few months of surgeries and sepsis and the feeding issues that accompany congenital heart disease in infancy). People were wary of her feeding tube and of the tape on her face. It was awkward when people saw the tape that the physical therapist put on her back to keep her posture strong as she grew. They thought the scars were a lot to take in and to see. I didn't feel any of that was scary at all, but that was the only way that I had ever known her at that point. She came in to the world needing emergency care. She was and always has been beautiful to me. She really is just beautiful. What I think that they were experiencing when they saw us was fear. I think that they were afraid because we all assumed all of us would have healthy babies. We all lived pretty boring and healthy lives. There was not a hint that any one of us would have a baby with a heart condition. If it could happen to me--it might happen to them.

Another friend (back then) became convinced that her child had a major life threatening disease and was often at the hospital on the same days that I was at the hospital. She had her child tested for cystic fibrosis and was in the same hospital but didn't stop in to greet me or my child on the day we were finally (after months) able to bring my baby home. She told me with some hesitation about this later as if I would judge her or make fun of her but I didn't. I got it. I didn't need any help in understanding. There was no CF, but there were things to worry about and I understood why my friend was concerned. At every milestone for the few years we kept in touch after this, that friend seemed to down play what made me very giddy. If I was over the moon about my 9 month old taking a few drops of fluid from a bottle and not needing to be fed by NG tube, I would say so. She would say, "You should give the baby to me. There is no baby on Earth who is able to resist feeding when I hold them." Over and over again, I gave permission to people like this to tell me about all that they imagined they knew when they didn't know. I didn't get angry with them.

So I am trying to give myself the same leeway in this area now because just a few days ago, when I saw another friend's daughter in a photograph (her daughter is about the same age as mine) hooked up to oxygen and in the hospital and being given fluids--while at the same time I heard my daughter reacting in her own way (not a normal kid's way) to having a virus--my mind went right to the worst. In my defense--one of my daughter's lungs is partially damaged and will not recover. She does fine with one and a half lungs. Still, her colds and viruses can be harder for her to recover from. Normally, I remember that she gets sick fast and that it often looks worse than it is and I don't panic. This time, I thought that the heart troubles were back. I thought I was hearing the other shoe drop. Then I got pretty down on myself for having any feelings at all about anything. I have this standard in my head that I am supposed to live up to that is completely unreasonable. I tell myself to stay vigilant against reactions of all kinds so that when or if any real heart problem arises--I will not fail to act immediately and without error. You know, because that is a normal thing to expect of yourself if you're trying to run yourself into the ground as fast as you can.

Something about seeing that particular picture at the same time that I began to notice my own child getting sick triggered something in me that I don't normally experience. I called the nurse line and gave all of the pertinent health history and she referred me to the emergency room. The emergency room referred me to one of its doctors. He did an EKG and said he thought it was an unusual looking reading, but not for someone who manages the interventions that she manages. He placed a call with the cardiologist to be sure and then we went home. Everything was back to normal again. Except that I am trying to stop feeling silly for letting my fear take over like I did--which is why I wrote this out. It has been very helpful for me to hear from other parents who have also experienced times when the fear got to them, too.

1/22/2015 I considered renaming this post something like, "Fear and Loathing in Disneyland" and to make it all about recent vaccine issues. I'm not going to do that. I do fear the consequences of large groups of people choosing not to get vaccines. I loathe the idea of innocent people getting sick when due to other peoples' incomprehensible refusal to believe in science. I'm not in Disneyland, though. I will just sit this one out as much as I am able.