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12 months of IVY blogs

by Pat Furlong


For the last 12 months, we have all enjoyed Ivy’s blogs. I have had the pleasure of introducing Ivy’s words, wrapping my words around hers, almost as if wrapping a gift, finding the perfect box, filling it with tissue paper, or laying the words on piece of black velvet, like an exquisite piece of jewelry. Some of the time, I thought her words should be on a soft pillow and carried as if in a procession for all to see. This month’s particular one, beamed from earth and posted on the moon to light up the night sky. 


Sometimes I thought about them as comfort food, hot chocolate and blueberry muffins or warm potato soup on days when sadness seemed to surround me.  Often, a few words or a phrase recycled in my brain as delicious morsels, a bag of chocolate chips to savor for the day, a gentle reboot for my thoughts. And there were times when I imagined myself back in school, imagining classes such as ‘Wisdom 101’ or ‘Learnings from Rain’ as I read and re-read Ivy’s blogs.


Like all of you, tis the season for thinking about Miracles, Magic, and Meaning. Duchenne has taught me many things and perhaps the most important is to give, to be part of something much, so much greater than the sum of its parts – a community that is willing to: bear all things, believe all things, hope all things, endure all things in the persistent pursuit of a cure.  


God Bless Us Everyone.


Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.

The Greatest of These  

by Ivy Scherbarth


Nearly everyone, nearly everywhere is celebrating something at this time of year, whether you call it Diwali or the Day of Ashura, Hanukkah, Kwanzaa, Yule or Christmas or something else entirely. Here's what I love: the mingled smells of snow and latkes and gingerbread, fresh oranges and fir needles and peppermint candy. The feel of wool scarves and velvet and polar fleece. The sight of rosy cheeked smiles popping out from the thin visible sliver between hoods and parkas. How about a favorite Christmas song performed by some Romani from France, as a flamenco version translated into Spanish, which was originally written by a Russian Jewish immigrant to America? Whether we see our modern society as a melting pot or a mosaic or even a tossed salad, most of us agree on certain virtues that we think about at this time of year. I am thinking about Peace. I am thinking about Joy. I am thinking about Love. I am thinking about Miracles and Magic and Meaning. I am thinking about Beauty, Truth and Goodness. I am thinking about Faith, Hope and Charity.


I am thinking about what traditions I want to pass down to my children. I want my kids to know that I believe we live in an amazing world, full of beauty that goes far beyond mere prettiness, a kind of immanent beauty that may lead us toward the Something More. I want my children to have a personal experience of peace and to care about what it really means to say to one another, "Peace on Earth." I want my children to understand and to cultivate a deep sense of compassion, to care about the welfare of those who are less fortunate than we are. I want my children to understand true generosity. I want my children to have a deeply nuanced, well-educated and well-rounded appreciation of where we come from and where we would like to be going. I want my children to know that I believe in goodness, the true human goodness we see embodied in the world's many shared traditional virtues.


Though the words are specific, the imperative is, I believe, universal:


         "4 Charity suffereth long, and is kind; charity envieth not; charity vaunteth not itself, is not puffed up, 5 Doth not behave itself unseemly, seeketh not her own, is not easily

         provoked, thinketh no evil; 6 Rejoiceth not in iniquity, but rejoiceth in the truth; 7 Beareth all things, believeth all things, hopeth all things, endureth all things. 8 Charity never

         faileth: but whether there be prophecies, they shall fail; whether there be tongues, they shall cease; whether there be knowledge, it shall vanish away. 9 For we know in part,

         and we prophesy in part. 10 But when that which is perfect is come, then that which is in part shall be done away. 11 When I was a child, I spake as a child, I understood as a

         child, I thought as a child: but when I became a man, I put away childish things. 12 For now we see through a glass, darkly; but then face to face: now I know in part; but then

         shall I know even as also I am known. 13 And now abideth faith, hope, charity, these three; but the greatest of these is charity." (King James Version, 1 Corinthians 13: 4-13)


Or, as most modern versions have it translated: "faith, hope and love." (New International Version)


I believe that parenthood itself requires me to express Faith, Hope and Love continuously in my relationship with my children. I owe them these things by definition. Parenting a child with Duchenne is not quantitatively different. Yet, our families are different, if only because of the awareness that Duchenne brings on its heels. Duchenne forces us to confront the unconfrontable. It forces us to do the very things listed above: to "suffer long" and be patient, to "bear all things, believe all things, hope all things, endure all things" in the persistent pursuit of a cure. And yet I believe that Duchenne is unsatisfied with us merely loving our sons. Duchenne requires us to work much harder if we want to see a cure. Duchenne requires a translation of our lives that includes Charity as well as Love. Charity is love in action.


Go back to the beginning of the chapter:


         "1 Though I speak with the tongues of men and of angels, and have not charity, I am become as sounding brass, or a tinkling cymbal. 2 And though I have the gift of prophecy,

         and understand all mysteries, and all knowledge; and though I have all faith, so that I could remove mountains, and have not charity, I am nothing. 3 And though I bestow all

         my goods to feed the poor, and though I give my body to be burned, and have not charity, it profiteth me nothing." (King James Version, 1 Corinthians 13: 1-3)


I don't want my faith, my hope, my love and my work for my son to go unrequited. I want my persistence to pay off in the form of a cure. The greatest of these is Charity. Nothing I pass down to my children will have a bigger impact. No holiday gift or symbol could possibly mean more. In fact, it doesn't matter how we translate it, whether we call our action "love" or "charity" as long as we take action. Charity is the way in which we bring all of our personal love, faith and hope into a public form. Charity is the sum of our virtues, embodied and working. Charity never faileth.


No one can do everything, but Everyone Can Do Something. Put your money and your time where your heart is.

Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.

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Pat Furlong, Founding President, CEO
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