It’s hard to fully share with others
what the life of facing Hunter Syndrome is like – from diagnosis, to grief, to fighting to save your child.
I sat down one evening, after the kids were asleep, with some song lyrics that I had begun about this passionate and painful life we lead. Within 30 minutes, God poured the rest of the lyrics out of me.
And through a good friend, I was able to connect with a compassionate and very talented songwriter (with multiple number one hits) here in Nashville to collaborate to make the song what it is today. You’ll recognize actual events from my life and the lives of many other families.
Spreading awareness of Hunter Syndrome has always been a passion of mine, ever since Case was diagnosed because of an awareness campaign (my mom saw an episode of the show Mystery Diagnosis about Hunter Syndrome). And so it was a natural step to share this song in a way that it’s message and that of ProjectAlive.org could possibly be spread farther and wider.
After hearing that the song was a semifinalist several weeks ago, it was amazing to be notified last week that the song is now a finalist in the ISC International Songwriting Competition! From over 18,000 total entries, “Alive” is now among 18 finalists in the country category and will be judged by artists you hear on the radio like Kesha, Eric Paslay, Sara Evans and Moby, as well as music industry publishers and A/R executives. In addition, voting from YOU and all of your friends can propel it to a People’s Voice award.
And for our Hunter Syndrome community and more, there’s this video and full lyrics below:
Alive
Words & Music by Melissa Hogan & Mark Irwin
She said I bet he’ll play football
He looks so big and strong
Momma turned away to hide her tears
A man once gave me a fire hat
Said I bet he’ll grow up into that
Momma just pretended not to hear
No I don’t wanna be a fireman or a football star
That ain’t close to what my wishes are
Chorus:
I want to be alive
That’s my only dream
But for some of us it’s harder than it seems
I want to live my life
Grow into a man
I want to watch my mom grow old and hold her hand
I want to be alive
They said there was no cure in sight
No chance for a normal life
Take him home and love him ’till he’s gone
But momma never was the same
A dragon fighter she became
And everyday she’s singing me this song
Chorus:
I want you here alive
That’s my greatest dream
But they’re saying that you won’t see seventeen
I want to save you son
And others just like you
Slay the dragon that has ripped my heart in two
I want you here alive
So she gave it all she had for years
No shame no pride but many tears
And after all the trials were said and done
Chorus:
I’m more than just alive
I’m living every day
As if this could soon be taken all away
I love with all my soul
Forgive without a thought
And hold tight to all my family all along
I want to be alive
As simple as that seems
I want to live long after seventeen
Content with one more day
Until I’m old and gray
Till heaven leads me to my final dream
I want to be alive
(c) 2015 Melissa Hogan & Mark Irwin