Marching with the band in the Christmas parade has been a lifelong dream of our child with Down syndrome. That is all he ever wanted to do.
Music has been his passion since he was in the womb (he would kick harder when his favorite songs were on). It was a music therapist who helped ease him out of a coma in the PICU after he flat-lined.
And now, in middle school, it is the promise of being able to go to band practice that keeps him focused on his studies in the morning.
And keeps him from shenanigans like running into the girls’ locker room when they’re changing.
Besides girls, he has taken a particular liking to all things percussion. When we first asked if he could march, the answer wasn’t no, but it wasn’t yes, either.
Would he do what he was supposed to do? Would he be able to make the three-mile trek along the parade route, orthopedic inserts and all? How many chaperones might he need? What if he got distracted and became bewildered, tried to run or plopped down on the pavement and refused to budge (as he is sometimes prone to do)?
Once we secured answers to all these questions, the answer was finally ‘yes.’ He was ecstatic and talked nothing but parade for the last month. He diligently practiced various instruments at home each night and faithfully counted out the rhythm of various Christmas songs.
We often overheard him in his room, pretending to be in band class, talking (as best his speech impediment allowed) to his imaginary band mates: “Ready? Okay…(tap tap tap tap) one, two, three, four…stop – try that again, this time, faster…”
But last week the band director’s pregnancy took a turn rendering her unable to lead the band in the parade – and the middle school band was removed from the parade lineup. We didn’t have the heart to tell our son – not yet.
On a whim, we emailed the high school music director who oversees our eldest son in the high school marching band. Explaining the situation, we asked if we might include him – we were already signed up to chaperone the high school band on the parade, anyway. The answer was YES!
Fortunately, there is no picture of me wearing my reindeer headdress, although I was spotted and called out to by several parade-goers, some of whom were administrators where I work….not sure how that affects my chance at a promotion.
He got a tummy ache about halfway through and had to retire to the wagon, but he kept playing until the bitter end.
Isn’t this what Christmas is all about?
Thanks, God, for the joy You brought to the world through Your Son, Jesus Christ. As we celebrate this time of His birth, we thank You for glimpses of that joy in the faces and lives of Your precious children. May we, as adults, ensure that our children know the gift of joy You have provided through Him. May all our hopes and dreams come true through Your perfect will.