Funny. I had not intended to put up a blog post today...but my brain has been firing on all cylinders...again. Still? I may need to apologize if there are just too many thoughts tied together...but, here goes anyhow...
These are the things that prompted this one:
~the responses to my post yesterday
~the current experiences of several friends
~the blog post of a friend
~the blog post of another friend
As usual, there was the mix of responses to yesterday's POST...but I was struck by a few of them...Namely the ones that told me that truth was somewhat subjective and while they were sure that's how I felt, that I was of course coloring the truth with my feelings...
Yes. Everyone's story is different, but I assure you that I tend to the objective and abrasive swing of the pendulum.
Here are the unarguable facts. Much of society is not comfortable with imperfect. That's why many babies with diagnosable disabilities are aborted. That's why there is make-up and plastic surgery and spanx. That's why there are nutritional supplements and exercise programs that promise amazing results. That's why people lie about their ages on dating profiles and lie about how awesome their lives are on their Facebook statuses.
I go through stages of reading all the blog posts in certain forums and not reading them for a month. I spend the day in the real world where my child is no longer elfin cute (Although I think she is still every bit of gorgeous and I am jealous of her hair!) and obviously not where she "should" be for her age. I see the looks, social ostracism, and physical recoil thanks to the prejudice against "not perfect". And then I see the posts that include the gum drops, roses, and rainbows...where life with a disability is perfect. The future is bright. And if my life isn't sparkles and unicorns and my child's future isn't limitless, it's all my fault for not looking, fighting, supporting, and pursuing enough therapies. And it is frustrating for me. Because it is ALL truth. The good, the bad, and the ugly. That's the thing about truth. It's just the truth. It's not always perspective.
I have a dear friend who has a child with social and physical issues intensified with learning issues. She has gone back to school for an Occupational Therapy degree. The classes she is taking have been torturing her because they are listing possible triggers for her child's disabilities...and many of her classmates are at the all-knowing college age where they are horrified that parents would endanger their kids in these manners...Nevermind that 20-30 years ago these consequences were not only unknown, but the triggers were publicly purported to be safe. (She vacillates between despair and guilt that it really was all her fault that her child is struggling the way he is...and feeling that she needs therapy to talk her down off the precipice.)
Compound this with knowing more and more people with kids with debilitating issues: learning disabilities, spectrum problems, cancer, chromosomal abnormalities, physiological and neurological instabilities....and you start questioning if your circle of friends is living next to a nuclear facility? Or if we have been so conditioned to be perfect, that all the flaws of our children are being looked at under a microscope and we are seeing the boogeyman in the shadows? Or if life really is changing compared to previous generations? One of the "girls" in a running group I lead is actually closer to 50 or 60, and she insists that the world really is changing, and even she didn't see this stuff before... And so I continue to question if all the chemicals in our food, in the world at large, and the genetic modifications really is affecting us at a Base 1 level...? Which brings us back to, is it all our fault?
And then I read a post by a friend, questioning therapies and comfort with abilities. Wondering if we are screaming the wrong rallying cry? Is it possible that instead of “more alike than different,” a more accurate rallying cry would be “different is ok”?
Followed by a blog by another post by another friend...and, as it often does, my brain scrabbled up the wrong image out of one of her phrases..."How I got here: from combat shoes to cowgirl boots".
And I remembered one of my favorite and succinct ideas: "Disability is a natural part of life."
I have been in and out of the valley of the shadow over the last few months...and I have been more battered by others' negative perspectives than usual...and have been irritated by the unwillingness to not accept the imperfect.
And I would like to reiterate, that when Elise was born, I clung to the Einstein Theory. I lived it, breathed it, and fought for it. She started getting therapies at less than 6 weeks. The whole gamut, Occupational, Physical, and Speech. And we didn't miss without vomiting or fever being involved. And that includes the time she was undergoing Chemo. We just didn't miss. I think of this being the Constant Combat Stage. The Infantry Phase. On the front lines, screaming while I attacked...every.single.moment.of.every.single.day. I fought for the entire future's possibilities.
And I got less combative as she got older and the gaps got more pronounced. I started the Sniping phase of my battle. I would focus on the important stuff. And fight over the top items of hierarchical importance. And when I found Elise and myself rankling under our schedule and resenting therapy, we would take mental health breaks...for Christmas, for summer....we would play with toys that were not angled for therapy...we played for play's sake. And we fought for this year and maybe next. Our eye on a particular prize, a particular goal.
And now? When we are facing gargantuan gaps? I still think we did the right thing. And I find myself entering a new stage. The Cowgirl Stage. Sometimes you just accept that you are riding a bull and you don't know what direction you are going in. You don't know what will "Fix The Problem"...or if it needs to be or even can be fixed. And you know it won't be easy. As a matter of fact, you are pretty sure that you will finish up, bruised and bloody, and maybe stepped on or gored. But it will be okay, and you will do what you can do, and there is nothing to be done, but to tie yourself on and allow yourself to get into the rhythm of the moment. And live your life. Do the best you can for your child, knowing that you won't be perfect, and that you will make the wrong call at many junctures, but choose to live in the imperfections... And maybe pray like Hannah making everyone around you think that you are drunk and crazy...confident that God will take care of it all....
Yippee Ki Yay