I think often of one of Lula's namesakes, my maternal great grandmother Tally Lula.  She and her husband had 12 children on a farm in Mississippi around the turn of the last century.  She lost 4 children, including 2 boys from a set of triplets who died two days apart at 18 months old. She likely had almost no support outside of her family.  The story goes that the two triplet boys died from being given bad medication by a drunk doctor.

I do not know how she coped with such an accumulation of tragedy.  I imagine that her children may have all survived if they had had the benefits that Lula had in her eighteen months.  I am sure that we would not have had Lula in our lives for as long as we did were it not for the astonishing network of support from Lula's many doctors, therapists, night nurses and babysitters.

We learned early on to be ruthless in our judgements of the people caring for Lula and we assembled an army of only the most devoted, honest, and attentive caregivers. We wound up hopscotching between between 5 different hospitals in 3 boroughs but it was always worth the extra effort.  I think in many ways the better a doctor you are the more the job takes a toll on you.  Truly gifted doctors cannot and do not remove their feelings from their work. 


Betty Keating - Bellevue Pediatric Nurse Practitioner
Relentless, devoted, a total force of nature.  Betty works only with kids with complex health issues, most of whom are also poor.  She helped us navigate the mind-blowingly complicated medical system and was the first person to tell us that we were entitled to night nurses and other help. 

Dr. Fiorino and Giusti - NYU Pulmonology
Both endlessly kind and patient with our frantic calls whenever Lula's breathing was labored.

Dr. Rickert - NYU ENT
Did the quickest scopes (where they put a camera in Lula's throat, which she did not enjoy) and the best dressed doctor she had.

Dr. Vo and Jackie LaMothe NP - Cornell Neurology
I think as a rule neurologists are not "people" people.  The previous neurologist made me feel like Lula was her science experiment, and also completely missed the presence of seizures. The neurology team at Cornell was a little overwhelming (there were 4 or 5 people coming in and out at every visit) but Dr. Vo and Jackie were always constants.  They always made us feel like Lula was worth trying to help.

Dr. Pappas - Bellevue Genetics
Dr. Pappas was the man who told us that Lula had demylenation and essentially would never be "normal".  I do not know how someone does that for a living.  He is brilliant but so gentle.

Dr. Davis - Cornell Genetics
Dr. Davis is currently growing Lula's cells so that scientists can try to figure out what genetic mutation caused Lula's condition.  She told us what a huge contribution to the world Lula was making by donating a tiny piece of herself.

Dr. Patton - Bellevue PICU
Bellevue is the red-headed stepchild to NYU in terms of money and equipment but you would never know it from the staff.  Dr. Patton and the PICU nurses were the definition of vigilant and fought to get us transferred to Cornell for Lula's final days.

Dr. Howell - Cornell PICU Attending
Dr. Howell had to help us decide not to intubate Lula.  She had to help us to understand how letting our baby die was the most caring and compassionate decision to make.  She was articulate and endlessly patient.  She had a certain maternal aura that made us trust her.

Dr. Phillips - Cornell PICU Fellow
Reminded me of the character Dill from To Kill a Mockingbird (the neighbor boy believed to be based on Truman Capote). His temperament was so far from the typical type-A trauma doctor. He was the man who guided us through the process of Lula's passing.  It was something he did with a heavy heart. Although he was utterly professional, he was not removed. He made sure that she was always comfortable and that we had as much time and space as we needed.

Dr. Millman - NY Hospital Queens Gastroenterology
Dr. Millman is the gold standard for how every doctor should be. She would spend upwards of an hour with us every time we came.  She was open minded to our thoughts (my wanting to experiment with blended foods) but clear on her opinions when needed.  She never resigned to anything inferior.  Last time we saw her she snuck us in to the ER because "if it's an emergency, why should you have to wait 4 hours?"
At an appointment several months ago I was setting up the feeding pump and Dr. Millman was holding Lula.  She was rocking her and talking to her and she said to me, "she makes me want to have another baby".  It was the most generous, wonderful thing that any doctor ever said to me. Lula was not just a cluster of problems, she was an enchanting spirit and Dr. Millman was able to see that.