In order to be sure we provide our readers with a valuable and encouraging list of Down syndrome blogs, so in order to be included on the list your blog must:
Well, shoot. The updated at least once a month is in the bag. But ... is my blog encouraging? It's encouraging to me, generally, to keep track of David's progress and the life of our little family. But I'm guessing that in the way most people might think of "encouraging," which I am thinking of as much brighter and sunnier, my blog may not make the cut. Which does not bother me in and of itself, but it does lead me to wonder, if it's not encouraging then what is it? Discouraging? I hope not, and I would hope for realistic, pragmatic, practical? Maybe? Though I'm keeping in mind the one time I looked up the word "pragmatic" in the dictionary (I had this pretty pretentious jerk of a boyfriend and he used it all the time, in such a variety of ways that I doubted my own understanding of the word) it said that someone who is pragmatic values the practical (which is what I was thinking) sometimes at the expense of the bigger picture or inherent beauty of alternatives (which I had not specifically known, and none of the other stuff in there helped me understand why the pretentious jerk used it so frequently, until I remembered, oh yeah he is just a pretentious jerk and it doesn't have to make sense to me). That's an interesting thing to keep in mind given the special-needs-parent deal - don't lose sight of the beautiful important stuff.(Another thing from the above illustration that will also serve me in this endeavor: remembering that at some point long ago in life, I came to the realization that (this is the way it pops into my brain, though it's not the most beautifully-worded version I guess): it is not [meant] for me to understand everything in the world. I am not destined to understand everything. It's not that I lack the intelligence or insight/acumen or anything like that, it's just that I accept I have limited information and time in millions of various situations that prevents a total understanding. And that's okay, as long as I remember it).
It's not inclusion or exclusion from this particular list that is giving me pause; I didn't even know it existed until Saturday. But you see what I'm saying, right? I started David's Caring Bridge site while he was still in the NICU, and it was initially focused on his medical stuff. But as his medical issues were resolved or managed one by one, it sort of morphed into a broader "family story" thing, with the sporadic political-ish topic covered. If a new parent, or a pregnant woman, came across this blog, what might she think?
I'm continuing to think about this, particularly in light of book-writing (nearly everything gets viewed through that lens these days). Not sure what conclusions if any I'll come to, and what changes if any I might make as a result. My general thoughts on this subject would likely be, "I do things the way I do them," but this did make me wonder. Why am I writing this book, exactly? To tell our story, yes. To tell the parenting-a-child-with-Down-syndrome story from my own perspective, combining the beauty of David's life with the stress of his medical conditions and worries about how the world will treat him with some humor, for the love of God, 'cause I am funny and while the topic is serious and I'm often too serious I generally want folks to lighten up about just about everything. To say to parents of a baby born with Down syndrome, or who have just received a prenatal diagnosis:
Or maybe it's the end of one world and the beginning of one that's way better than the old one.
I'm continuing to think about this, particularly in light of book-writing (nearly everything gets viewed through that lens these days). Not sure what conclusions if any I'll come to, and what changes if any I might make as a result. My general thoughts on this subject would likely be, "I do things the way I do them," but this did make me wonder. Why am I writing this book, exactly? To tell our story, yes. To tell the parenting-a-child-with-Down-syndrome story from my own perspective, combining the beauty of David's life with the stress of his medical conditions and worries about how the world will treat him with some humor, for the love of God, 'cause I am funny and while the topic is serious and I'm often too serious I generally want folks to lighten up about just about everything. To say to parents of a baby born with Down syndrome, or who have just received a prenatal diagnosis:
This is not the end of the world.
It may feel as if it is right now,
but I promise it's not.
Or maybe it's the end of one world and the beginning of one that's way better than the old one.
(Not sure what is driving the font/color/size variation. Maybe having a silly morning)
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