Jessica Kenley had a few bad years in a row, where it seemed that nothing went right. Her relationship failed and in the meantime she gave birth to a little boy with a fatal skin condition. She raised the boy nearly alone, without even the support of her immediate family who didn't know how sick the boy was. The condition (EB) causes any friction of the skin to result in massive blisters and peeling of the skin, which is painful as well as dangerous and makes these children susceptible to all kinds of infections, so Kenley had a hard time even accepting support from nurses or doctors who didn't understand the fragility of her baby. Needless to say, it was a rough time. Coupling that with some disappointing setbacks in her career and some financial stumbles and she ended up having some very difficult times. She had been hopeful that her situation would improve when she found herself pregnant again, 3 years after the birth of her son. Unfortunately, it was not until the baby was born that she discovered that the baby, a girl this time, would have the same affliction.
While the circumstances certainly are depressing and your heart aches for the author, somehow this book isn't sad. The book is a reprinting of the author's journal entries, dealing with the care and maintenance of her young daughter and the difficulties of moving back in with her parents to get additional support. The author has done a remarkable job of not only balancing all of the difficulties, but not allowing herself to get mired in blame for the baby's illness. Since she had previous experience with caring for an infant with EB, she was better prepared for the physicality of it (if not the emotional weight) and was able to be more proactive in her infant's care, which surely resulted in a better quality of life.
Following the death of her daughter, the author talks at great length about the grieving process and how she coped and how challenging it was to be walking the tightrope of expectation and emotion. Which is truly a subject that not enough people recognize - not everyone who loses a loved one is inconsolable, and yet how are you "supposed" to act after losing a child? If she does not throw herself on the casket, is she a bad mother? If she wants to go out for a night of fun, should she feel ashamed?
The author does mention that she has a grief counselor, for which I applaud her. Having been in medical circles and around palliative care, I firmly believe that grief counseling is for EVERYONE and maybe doubly so if the loss is not unexpected. When you're dealing with the end of someone's life, there can be great feelings of relief and it's OKAY to feel that way. The author's casual way of writing made her feel like a friend and I wish I were, if only to help remind her that yes, her situation sucks. REALLY sucks. But it's okay to move on and keep going. In any event, in case she reads this: keep writing. You have a unique perspective and something to offer.
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