Thursday, April 5, 2007

Hits the nail on the head!

Here is something I grabbed from a wonderful site. The minute I read it, I was wiping tears off my cheeks, and completely amazed at how this person could know my exact feelings. This is from Schuyler's site, and I wanted to share because I found comfort in the fact that I am obviously not the ONLY one who feels like I feel.
"I'd like to find a new term for special needs parents, one that doesn't include the hated words "special needs". I have no idea what, though. "Shepherds of the Broken", perhaps.I don't speak for all or even most of my fellow shepherds. But judging from many of the people I've met, both online and in this grand rough world, I know I speak for some. I speak for some of the parents of the broken who don't get divorced and don't give over the care of our broken children to the state or to someone else seemingly more qualified than our clumsy, stupid selves to help our kids. We are shepherds in the storm. We stand, dumb but firm, against the winds, and we endure.Shepherds of the broken engage in acts of compromise, often in ways that are hard to explain and which perhaps don't make sense to the neurotypical world.We find that we stand apart from other parents, that the things that thrill us have a whiff of desperation about them, such as when our broken children achieve things that are both commonplace and yet sometimes seemingly out of reach. When I discovered that Schuyler received a perfect score on her spelling test on Friday, like any other first grade child might, how do I explain how both my joy and a little bit of sadness fed off of the low expectations she's battled in the past, where the very device she uses to take that test was considered to be out of her intellectual reach?And yet, there are fellow shepherds out there who celebrate when their child survives another year, another month. When I write about Schuyler's struggles, so much less terrifying than theirs, they don't necessarily look at me with pure joy, but perhaps with something very gently tainted with contempt. And I don't look at them with sympathy alone, but also fear, and an impulse to step back from their world.The most surprising thing I've discovered about being a shepherd of the broken are the limits of community and empathy amongst fellow shepherds. I've had tense discussions with other parents that have degenerated into "you think YOU have problems", as if our broken children were competing to see who had the most monstrous of monsters. I have discovered over the years and particularly of late how lonely our shepherding lives can be. Standing outside a neurotypical world, we also stand apart from each other. Most of all, we find ourselves standing apart from our spouses and families.Yes, shepherds of the broken live in a world of compromise. The divorce rate among us is higher than the general population, but for a good number of us, splitting up is an unworkable option. We learn to forgive transgressions so long as they are against each other and not our broken children. We learn to accept that our relationships are bound in ways that the unbroken can never completely grasp. We're alone in profound ways, working with the one person in the world who can understand what we're going through and yet also the one person who can't ease our sorrow, steeped as they are within their own. Our fellow, spousal shepherds have their own pain. Locked together in a relationship that becomes mostly, then entirely, about our shepherding duties, we sometimes turn to religion for help, or we try to find time to pretend that we're just like the rest of you, but mostly we turn inwards, to the space that is ours alone. We labor together as partners, as caregivers and educators and advocates, and perhaps eventually that's all we become to each other. And the weirdest part of that is how okay we are with it, because as lonely as that kind of relationship can be, it is that partnership against the monster that we depend on all the time. It's the one thing that we can't do alone.Shepherds of the broken try to build lives like the rest of you. We can't expect you to completely understand how we live and how the rules that govern much of society stopped working for us a long time ago. It's not just our children who stand apart. We shepherds of the broken find ourselves unable to build relationships. Our marriages and families are eaten by our children's monsters and the people we reach for in the unbroken world are unable to reach back.If there is one thing that Julie and I and countless other parents have found about having a broken child, it is that in the end, it can be the loneliest life in the world. It can be like an emotional limbo.And yet.Yet through it all, Schuyler stands at the center, and when every other relationship falters, her love is the light that guides me and the warmth that sustains my life. She is like a star, from whose gravitational pull I can never escape but whose very existence gives life and purpose. She is both goddess and jailer."
Just gave me the chills. This man Rob ,is amazing. I read his site regularly, in his writing, I can get lost, I can finally say, "Yeah, I know what you mean!". I know that there is someone out there that understands completely how I feel. Probably more so than I understand it myself! Rob has written a book that is going to be published soon, and I can't wait. I am actually fasincated because his daughter, also diagnosed with CBPS is far different than Daniel. I wait for updates on Schuyler, intreged by her abilities, and listening for Rob's wittiness in his posts. I am very grateful that I found their sight, as it has helped me emotionally.

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