Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living Duchenne.


At this time of year, you can almost hear the weeds growing. Or at least I can. No matter how many hours I spend out there, every time I look out the window I see weeds. Some of them are enormous, bigger than I am. Some are dangerous, with thorns and poisons and sticky sap. Some of them are actually quite beautiful plants which are just growing in the wrong places. Weeds, weeds, weeds.


Naturally, as I pull weeds, haul weeds, compost weeds, I think. And, being me, I think about other parts of my life that are amenable to the metaphors of weeds and weeding.


At this moment, in my vegetable garden, all of the plants that are growing there are edible, though only a few are ones I intend to actually eat. The weeds vastly outnumber the plants that I planted. And though more numerous, the weeds are still smaller than the pumpkins, tomatoes, and zucchinis. I'm thinking of the vegetable garden as my metaphor for advice about Duchenne. Perhaps everything that doctors and experienced parents tell me is of some benefit to my son. Yet the sum total of all of that information is overwhelming. Do stretches, take steroids, swim, don't let him walk on stairs, encourage him to be independent, do night splints, try power soccer, take vitamins. I sift through the advice, in just the same way that I pull weeds, sometimes piece by piece, or more often, species by species. I can't possibly follow all of the good advice, let alone the not-so-helpful variety. The trick is figuring out which is the veggie I intend to nurture, which the merely edible weed that must be pulled out.


I also have weeds growing in my garden path. Most of these are nasty, pokey thistles, a species considered an invasive exotic weed which not only messes up my nice pathway, but can also get me fined by the city. But some of the plants choking out my path are beautiful native wildflowers that have simply reseeded themselves in an inconvenient location. These pathway weeds are the ones I think of as Duchenne symptoms. No matter what I do, they spring back up year after year, month after month. They're painful. And annoying. And they hinder my family's mobility in the garden, making it hard to get where we're going. They compromise my values, those weeds, tempting me to get out the poison spray in desperation and despair. These are the weeds that make me feel like I am going crazy. Yet I'm sad when I pull the little wildflowers. It isn't their fault that they landed in the wrong place. They're like the tears that spring to Rain's eyes at the slightest perceived disappointment: I want them to stop, for his sake more than mine, but at the same time, the poignancy of those tears is so sweet because I know their suddenness and frequency are intimately tied to the same quickness to laugh that I cherish in my son.


There are more weeds around here than just in the vegetable garden and the pathway. There are weeds in the lawn, weeds in the meadow, weeds in the flower beds. There are even weeds in the pond. I'll never get to them all. In fact, even winter won't eradicate them, though it will cut them down a bit. So I must be resigned to pulling weeds. And thinking about weeds, and other things, under the hot summer sun. Maybe my weeds don't mean anything more than plain old, ordinary weeds. Maybe I should take a break and have a glass of lemonade in the shade with my son. I'll just avert my eyes from the weeds I haven't gotten to yet.

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