I Hate Muscular Dystrophy: Loving a Child with a Life-Altering Disease
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by Star Bobatoon, Esq., Photos by Mark Gomez
Paperback: 120 pages
Publisher: Blackcurrant Press Company (May 11, 2011)
Product Dimensions: 8.8 x 6 x 0.4 inches
"This is a personal story of a family's ability to love and support each
other through the unexpected challenges of a life-transforming condition. It
speaks of the strength and resolve of a mother who believes that life is to
be lived and celebrated, despite any real or perceived limitations…
It gives us poignant glimpses into the initial disillusionment of a parent's
dream for her child, while at the same time, openly embracing all of the
gifs that this experience has to offer… I Hate Muscular Dystrophy shows us
that life can be beautiful even during periods of despair and pain. It helps
us know that miracle and wonder of life is found… in simple moments of
mystery and grace."
-- Excerpted from the Foreword by Dr. Julie vanPutten (pg. vii)
Book Reviewed by Kam Williams
Unless your life has somehow been touched by Muscular Dystrophy (MD)
directly, the only time you probably think about the disease is during the
Labor Day Telethon hosted annually by Jerry Lewis since the mid-Sixties (up
until the recent announcement that he's being replaced as emcee next month).
And while making a contribution to a worthy cause like "Jerry's Kids" is
certainly laudable, you still might not know what it's like to live with MD
on a day-to-day basis.
For this reason, may I suggest that, before tuning in to this year's
fundraiser, you read I Hate Muscular Dystrophy: Loving a Child with a
Life-Altering Disease. Half-heartfelt memoir/half how-to primer, the book
was written by Star Bobatoon whose son, Hurricane, was diagnosed with
Duchenne Muscular Dystrophy (DMD) in 2001 at the tender age of 5.
Star was not only pregnant with her second child but employed as an attorney
at the time, so the prospect of caring for a kid with a degenerative disease
proved daunting, despite the presence of her very doting spouse, Mark. Thus,
her initial response of "complete shutdown and denial" was understandable,
given the profound effect the condition was about to exact on their lives
and relationships with each other.
Eventually, the author came to make peace with the "exasperating
characteristic" of DMD, reflecting that, "Just when you think you've got it
handled, it changes…and "never for the better." Nevertheless, as Hurricane's
muscles atrophied and he lost the ability to walk, her spirits have remained
buoyed by a determination to help him make the most of the time he has left
Having learned how to overcome depression in the face of his dire prognosis,
Ms. Bobatoon lays out a 4-point plan, augmented by exercises and
affirmations, for other families struggling to come to grips with MD or any
other seemingly all-consuming affliction. Still, it is perhaps fitting to
close with the Star's moving summation that "Living with DMD has made me a
stronger, more patient and more passionate person… It has led me to my
purpose and for that I am grateful."
Powerful proof that illness might sometimes serve as a blessing.