My youngest
son “Christian” is in the percussion ensemble at his school. He just recently had his end of the year
concert, and I must say, I was impressed.
There were at least twenty students on the stage playing some difficult rhythms. I can’t even imagine teaching that many
elementary aged children how to play instruments. I admire the teachers and their incredible
patience.
What I saw
in my son’s eyes amazed me. There was a
joy that I saw in him that seemed to light up the entire building. Of course I am prejudiced, but my son was
taken away by being able to participate in a group outside of the hospital
setting. He was just one of the many
other children on the stage, and he loved it.
He enjoyed his “new normal” in a way that touched me.
I thought,
while watching him with the other students, that there was nothing to indicate
that he was any different than the other children. His bleeding disorder was not a factor in his
participation. The idea that we could
suspend thoughts of hemophilia for just a brief time was very liberating. My son has been reclaiming his own identity
in the world, and it was amazing. Of
course I got emotional, because his struggles involve the whole family. His sense of freedom is linked to our own
freedom.
Those of us
with children who have chronic bleeding disorders never take for granted what
many others seem to accept as expectations.
Our thanks for the simple mundane tasks of an ordinary day remind us
that our children’s health can change at the drop of a hat. Through it all, we will give extra thanks to
participate in the things that bring our family joy.
Today, I am grateful that my boy is in a
band; playing to his heart’s delight.
Joe
