Many years ago, a film crew was following various doctors around for a couple of weeks for a documentary on health care. The plan was for a two or three-part show on PBS featuring actual situations in children’s health. I suppose it was a reality show before the genre existed except, of course, there were no prizes or gimmicks. One of the doctors they followed was our pediatrician, Eileen Aicardi. Since we were at least weekly visitors in those days, they asked if we would agree to allow them to follow Maggie. That meant I agreed if anything happened they could come and film it. I said sure, why not.
Something did happen. Maggie got very sick with pneumonia and had to be hospitalized. Pneumonia is one of those things that gets worse before it gets better. I thought we could handle things at home, and we did for a while, but they got out of control pretty quickly. I had been up all night with her and knew I was in over my head. I called her doctor about 6:30AM and told her we were going in. I could not drive her by myself because she needed hands on care. Our choices were either to call an ambulance or wake the boys and have Steve drive us. It was a Saturday morning, so we had to drag the boys with us
By the time Maggie was in her hospital room it was an “all hands on deck” situation. Maggie was in the bed, the respiratory therapist and I were working feverishly to keep her airway cleared and keep the oxygen on her. Steve was keeping the boys in line and arranging Maggie’s equipment. The film crew arrived with the doctor and started filming everything. I really did not care; my focus was on Maggie. Besides, if they wanted reality, they were getting it.
The small hospital room was very crowded. Maggie’s wheelchair takes up a lot of free space and there were at least a dozen people in there. The boys were young and they were playing with the controls on the empty bed next to Maggie’s, oblivious to all the action. (They were already old hands at this stuff). In addition there was the cameraman and three others from PBS, the doctor, the RT, the nurse, the charge nurse, Steve, me and of course Maggie. We were suctioning, repositioning, fixing the oxygen and comforting Maggie every second. It was not a pretty site.
We had been working like this for about 45 minutes when suddenly the absurdity of the situation hit me. I was exhausted and worried and there were cameras, strangers, and more activity than I could even process. I looked up as if I saw it all for the first time. The charge nurse, who I knew, caught my sudden realization. She was behind the camera. She grinned at me and started waving a lipstick in the air as if to tell me I had to look good for the camera. I started to laugh and had to turn away.
When the show aired on PBS Maggie and I were left on the cutting room floor. This did not surprise me. I cannot imagine it made for good television.
If only I had grabbed that lipstick.
Gratitude: I am grateful for the nurses who have cared for my daughter under the most extreme circumstances and cared for me in the most unusual ways.