I will admit that I’ve had my own fixation with achievement.
When we found out Eloise’s diagnosis, I asked questions like:
Will she walk?
Will she talk?
Will she be able to hear?
Will she be able to see?
All with I don’t know for an answer.
The first few days of Eloise’s life, I asked the doctors the same set of questions:
Will she walk?
Will she talk?
Will she be able to hear?
Will she be able to see?
All with no for an answer, referring to the empty space shown on the MRI of her brain and being told something like, “She doesn’t have the necessary parts of her brain to do ______.”
When we didn’t make Eloise a DNR by her second day of life, I was questioned. Here’s what a neonatologist wrote in her note on Eloise’s second day of life:
“She had a couple of episodes during the last 24 hours requiring bag-mask ventilation due to severe bradycardia/desaturation and I explained that I am concerned she will do this again although I can not predict when. We discussed code status throughout the day and parents do wish for her to be a full code. I discussed that in the event she has an episode in which she is not responding to bag mask ventilation, she would be intubated and receive chest compressions. There is a chance we would not bring her back with chest compressions and her heart could stop and she could die in her bed instead of her parents arms. They stated they understood, however at one point during rounds the mother did ask me if the patient would walk or crawl. They also wish further investigation into her apeneic episodes. I explained that we would be doing a brain MRI to assess for seizures however it is a strong possibility that the episodes are a result of her very abnormal brain and possible inability to handle her own secretions. From our conversations, they appear to listen and be able to repeat the information, but I am concerned they do not understand the implications for their child.”
Here’s my question for the youthful grandmas and the doctors and, honestly, myself — a person highly motivated by achievement:
What if life is not defined by achievement?
