Since my sons were diagnosed with Duchenne muscular dystrophy it seems as though I am always waiting for the next “something” to
happen. Being a fairly positive person I
don’t dwell on negatives, but it is unsettling knowing a child with a
progressive degenerative disorder will lose specific abilities, even more so, not
knowing exactly when those changes will occur.
Alfred Hitchcock was a master movie producer who knew how to keep an
audience in suspense, but he would never have been able to reproduce the same
sense of foreboding I’ve felt watching how DMD affects my sons. The expression “waiting to exhale” is more
appropriate in describing this experience than the more benign phrase “waiting
for the other shoe to drop”.
When parents talk about how DMD affects their sons I notice a familiar expression on their faces.
The unknown haunts us and anxiety is festering just below the surface. Some parents superstitiously refuse to talk
about aspects of the conditions as if the mere mention of an event will
facilitate it happening. It can be paralyzing, but for the sake of our
sons it is best to be prepared for these changes being informed and staying supportive
during the process. Being ahead of this
curve isn’t easy, yet knowing what to expect and developing a proactive
approach to each issue is necessary in avoiding a sense of helplessness when a
significant change occurs. In addition
to reading about current care and treatment options it is helpful to speak with
parents whose sons are older than our own who can offer advice about how they
and their sons dealt with some of these issues.
Staying connected and developing a network of knowledgeable families creates
a great resource.
While the natural history for DMD is well documented, the variability of progression is so great that even siblings may have very
different presentations of the disorder.
My son Matthew stopped walking rather suddenly at age eight. His brother Patrick walked well until he was
twelve then there was the downward spiral as he struggled to stay on his feet
before finally letting go just after his thirteenth birthday. Even though I know changes are coming and like
so many parents I hope beyond reason things will remain forever stable, I hold
my breath waiting while at the same time striving to stay focused on being
ready for my sons. Again, talking to
parents and young men who have been through some of the changes we will soon
face has helpful in learning what works and what is important.
Birthdays, anniversaries and other events take on new meanings. We want to celebrate an
accomplishment, yet a reminder that we are closer to the next “something” hangs
like a pall and often our enthusiasm is kept at bay. I know many people who now hate Labor Day
because the Telethon reminds them of muscular dystrophy. No one said life would be fair and for those
of us tenacious enough to keep fighting it becomes more of a challenge to not
let our worry overwhelm us.
My son Matthew is a senior in high school and like many of his classmates he is actively making plans to attend college next fall. He applied to three schools and recently
learned two have accepted his application including his first choice, the
University of New England. The school is
more expensive than his other choices, but the campus is very close to home
with a student body mainly comprised of physical and occupational therapy and
medical students which should make for an empathetic environment for a student
like Matthew. UNE is offering a very
generous renewable scholarship which makes it a great option. Alice and I are very proud of Matthew’s
accomplishments and are grateful with the prospects of his attending
college. Ten years ago I never thought
we would be making these plans. Even
today I have concerns. The fall of 2011
will be upon us soon enough and I worry that Matthew’s endurance will
deteriorate not allowing him to attend fulltime or at all. This may seem like a silly concern, but those
who understand DMD realize this is a rational fear as loss of ability often
comes suddenly and without warning. For
the next several months I’ll be holding my breath until he actually begins classes.
I have to admit that I am grateful my sons are doing so well. They have very good care and are
otherwise healthy and intelligent. Parenting
is not an easy vocation and is made more difficult raising a child with a
progressive disorder. Despite my
concerns about each coming phase I remain optimistic and encourage my sons to
keep reaching for their next goal. To
date I haven’t been disappointed and seeing my sons’ accomplishments validates
It’s really no wonder parents in the DMD community hang onto one another. Who else would fully
understand? Close relatives are often at
a loss of what to say or do and many friends won’t ask about our sons fearing
what we might say or how we will react.
We become accustomed to the present state of our lives and will do just about
anything to avoid disrupting this “normal” we are tentatively enjoying. So, many of us live from day to day staying
as upbeat as possible for our sons and quietly ruing the unpleasantness of
tomorrow. While I continue to hold my
breath and wait to exhale I won’t forget that even during those anxious moments
there are many things for which I am grateful, much that can be done and I won’t
let concerns about those next changes keep my sons or me from looking further
into the future.