‘’I needed to be with her. Not because I felt a deep love or bond (to be honest, I felt neither) but rather because that is what I thought a good parent would do, and I needed to feel like a good parent.’’
Dr. Kimberly Jane Lee is a paediatric critical care physician, who is used to seeing absolute tragedies on an almost daily base. As a physician she is prepared to treat these children, take critical stands in decision-making, and to a certain extend support their families. However, when her own personal life takes a turn, she realises only how little real empathy she was able to bring up.
Catastrophic Rupture is an emotional, honest, raw and at times heartbreaking memoir in which the author describes her emotional, financial and practical difficulties raising her second child that’s born with severe brain damage after a traumatic child birth.
‘’She wasn’t terribly sick, but she certainly wasn’t well. Not dying, not really living.’’
With Catastrophic Rupture, dr. Lee provides a highly introspective work that may benefit many parents (or other relatives) that struggle with raising a child with severe disabilities. How does one deal with guilt? With not feeling like you can’t simply love your child? With practical difficulties, such as insurance not covering basic care necessities? With legal procedures against a hospital? These are only some of the questions dr. Lee discusses in a beautiful way without ever getting overly emotional.
In addition, the author describes many lessons she took as a physician, which I believe may highly benefit many of her colleagues – including myself. How can we improve our communication with our patients and their families? How can we be more empathic? How should we reflect on our own views versus the views of the family, especially when these lead to conflicts in treatment decisions? Two quotes that really stand out:
‘’Upon learning of this disconnect, I realised that much of what we say in medicine has another laying of meaning. If we want to communicate well, it is not enough to make sure patients and families understand the words we are using. We need to go a step further and make sure they understand the implications of those words.’’
‘’Communication gets a lot of attention in medicine, in large part because we physicians are notoriously bad at it. We use words and abbreviations that nobody understands, we’re blunt and brusque when we should be empathetic and compassionate, we deliver orders that are unclear and imprecise in a manner that discourages questions or attempts at clarification’’.
Throughout the book the author relates to her personal struggles, which must be so relatable for many a parent raising a child with disabilities. We feel the insecurities, the doubts, the pain, all the conflicting emotions. But we also get to meet Josephine. Who lives life in her own beautiful way, who achieves her own incredible milestones, who teaches us some very important live lessons. We see Josephine through the eyes of medical diagnosis, of a struggling mother, of a loving father, and above all: through the eyes of her classmates. Who all love her just for who she is: a funny kind soul with her own special character.
Like dr. Lee describes: ‘’We are all multifaceted, but for children like Josephine, it seems the facets are sharper and more distinct. This can lead people to believe that the side they see is the only side that exists. … But I know now that our future will also hold wondrous moments of simple joy. Moments whose beauty I can only appreciate now, after learning that sometimes the best answer to three minus three is purple.
An incredible work. And to end on another amazing note: all author profits of this book are donated to the Complex Care Program of the Children’s Wisconsin and the Medical Humanities Program at the Medical College of Wisconsin.
‘Catastrophic Rupture’ by Dr. K. Jane Lee. TEN16 Press, 2021. ISBN: 9781645382461