It is amazing how quickly my moods can swing. One minute I am crying on the phone to my
husband, wracked with fear and ten minutes later I am feeling in control and
rather elated. The irony is that the
same event caused these two very different reactions.
I just returned from a three day visit with Matthew to
Cincinnati, where he sees a team of specialists on an annual basis at an MD
clinic. An added reason for the trip is
that Bobby and I enrolled him in a clinical trial for a growth hormone study
for linear growth and potential muscle strengthening for boys with DMD.
Matthew was selected to be in the test group.
Of course, I knew that there was a 50/50 chance of this and
in my heart of hearts was prepared for this, but if I have to be honest, I was
hoping that he would be in the control group.
I am not particularly proud of this.
I knew I should be wanting to provide my child with all the
opportunities possible for better physical health, but the idea of putting a
needle in my innocent boy, every day for 6 months, seemed to steer me away from
the big picture.
So after the “shock” that should not have been a shock and
after my moment of weakness, we headed to see the nurse who was to show me how
to wield a needle. I should not have
been surprised when Matthew showed more curiosity about the process than
concern about the potential pain. He let
me poke him (over and over, in fact) and as I learned the procedure, suddenly
two things occurred to me.
One – I am not the patient.
This is not all about me and if my child, the actual patient, is not
concerned, than I need to be strong for him and get the job done.
Two – Finally! After
years of feeling helpless in the wake of my son's diagnosis, I can actually be
part of the treatment process. I can
personally give him what may result in added strength.
We agreed to have Matthew participate in this study because
we wanted to help further research. This
trip reminded me of how humbling it is to know that there are people out there
who have a passion for helping boys
like Matthew and have made a career out of this passion. I feel nothing but great fortune for the
opportunities that have been placed before us.
Hope abounds and life is good!
Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy.
Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy.
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