Bob Dylan’s song “Forever Young” has recently taken on a very new meaning. It used to be so hopeful, a lovely wish of a parent for their child. Dylan wishes his child to “build a ladder to the starts and climb on ever rung”, a very poetic wish for one’s child to achieve their hopes and dreams. For me this line is more literal- I wish my son will continue to be able to physically climb ladders, or stairs, or just be able to walk for that matter. My dreams are simpler now: may you continue to run around acting out your imaginative pretend plays, may you continue to jump up and down in excitement, may you one day walk down an aisle to receive your highschool diploma, may you stay healthy.
Duchenne Muscular Dystrophy is a very sobering disease, something that makes you never take the mere act of sitting up and breathing on your own when you awaken in the morning for granted. As I tucked my son into bed tonight the song “Forever Young” popped into my head. As I velcroed on his nighttime orthotics and helped him get comfortable all I could desperately pray for was that he doesn’t ever lose the ability to roll over in a bed. Such a simple thing we take for granted: the ability to roll over. If I have gained anything so far in this journey its appreciating every small act, every moment.
Sometimes I wish I could just stop time and keep my Yehuda from growing up, but time marches on. The truth is, its the living and longing for the past that hurts the most and impairs my ability to move forward. As a good friend recently enlightened me, we can only tackle difficult situations when we are willing to jump off the cliff, so to speak. Its when we fight it and avoid reality that we become frozen and stuck. When we are able to accept our situation and jump off the cliff, we can then move forward and hopefully face the future with optimism.
I have jumped off the cliff and thrown my worries to the wind as much as I can. I have surrendered to a Higher Power. My prayers for a cure and hopes for a better future for my son and the other boys affected by this disease remains the same. But, instead of wishing for Yehuda to stay forever young, and longing for something that no longer exists, I am jumping off the cliff and not letting the past hold me back any more.