Winter 2015-2016 has been heartbreaking for families affected by MECP2 Duplication Syndrome all around the Northern hemisphere. So many of our affected family members have been seriously ill, in critical care, and sadly some have not survived. It has been crushing for families directly affected, and even those not directly affected feel some of that pain. It has been hard to keep the light of hope burning for many of us.
As the father of one of the lucky ones, who have so far made it through this winter untouched, I feel empathy for the many families who are suffering now— but I also feel guilty about our family’s good fortune and feel afraid that our luck will change. It is really hard to know what to say to the families that are hurting so badly right now. No words seem adequate. As difficult as it may be at times, we need to hold on to hope, no matter what comes.
For me, music helps, and there are a number of songs that I find helpful for different reasons. I am sure others have their own favorites, but here are a few of mine. Neil Young wrote Transformer Man for his son who has cerebral palsy and was learning to use a speech synthesizer. It was first released in a version where they used a Vocoder communication device to sing it, but I really like the unplugged version. So Transformer could refer to that electric voice but it also clearly speaks of the child’s ability to transform the parent: “Every morning, when I look in your eyes, I feel electrified by you.”
Shaggy’s HOPE is also a favorite in our house. There is an official video but we made up our own family video to go with it seven years ago. “And this hope that keeps me holding on and on. And this hope that makes me carry on…on and on.
Finally, Natalie Merchant’s Wonder reminds me of how special our kids really are (and really how wonderful every individual is): “People see me, I’m a challenge to your balance, I’m over your heads. How I confound you and astound you to know and I must be one of the wonders of God’s own creation and as far as you see you can offer no explanation…”
These are just three of hope anthems on my play list. A few of the others include Yolanda Adams’ Never give up, Garth Brooks’ the Change, and the incredible rendition of At Last that Phoebe Snow dedicated to her daughter who had Rett syndrome
They may not be the songs that touch you, but I bet you have your own.