Monday, August 10, 2015

Book Review: Messenger by Jeni Stepanek

I first read this book shortly after its release, and I reread it again recently, with the objective to be able to review it here.  First, it should be stated that Mattie Stepanek is my favorite poet.  I'm also a poet, in no small part, I think, thanks to him.  I first found out about him in the spring of 2003, having happened upon the CD he and Billy Gilman collaborated on, Music Through Heartsongs.  I was devastated when I learned Mattie died the day after my 23rd birthday.

After his death, I bought all his books (all 6 of his Heartsongs volumes, plus Just Peace.)  When I heard, years later, and completely by chance that Jeni, Mattie's mother, had written a book about Mattie's life, I was instantly interested.  Having read Messenger a few times now, I feel like I can, perhaps, give a somewhat balanced account of my thoughts.

There is little, if anything, that I dislike about this book.  Jeni is thorough and honest, and at times, that means reading about themes the average reader may find uncomfortable:  the death and preparation for burial of four children, a child facing their own mortality, extended stays in the pediatric intensive care unit, grief in early childhood, the deep impact of September 11th and the subsequent war on a child, and the Catholic faith.

Mostly, though, Messenger touches on extremely important issues, many of which touch the disabled community on a continued basis.  These include:  being a disabled parent raising a disabled child, abuse, living in poverty, and the ableist attitudes in the medical community.  Without being overbearing, Jeni Stepanek writes about the importance of friendship in both hers and Mattie's lives.  She writes about how she taught Mattie to focus on the things he could control, in the face of so many things he could not, like his attitude.  She writes about the importance of summer camp in Matie's life.

There is even more to look forward to in this book, however.  Jeni shares about the unexpected impact fame had on Mattie, about her experience parenting a child with accelerated emotional and intellectual intelligence.  She writes about the devastating but necessary conversations she had with her youngest son, respecting his right to talk about end of life care.  She believed in letting Mattie be fully informed about medical decisions concerning him, and letting him make his own final decisions, as the end of his life drew near.

I admit, there were not many chapters I was able to get through, without shedding tears.  Jeni's writing is poignant, and I continue to believe that this book is one of the most significant I hae ever read in terms of the disabled community, and the only one I have ever read that details a disabled parent raising a disabled child.  I would absolutely recommend this book to anyone (above 18, as it does include some grave themes.)  Such an important read for disabled and nondisabled readers alike.

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