Another Saturday, another look back at a past post that left some sort of impact on me. I received quite a bit of feedback on this one. It's just one of those topics, I guess.
If you don't have a kid with a diagnosis, it's hard to explain. Perhaps you think that you'd take anything away that makes life more difficult for your child.
"Really," you think, "what's there to consider?"
Well, a lot, actually.
There are many, many parents of children with special needs who wouldn't change a thing.
Perhaps one day I'll stand among them. For now, though, I still identify more with those on the flip side of the coin.
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Originally written March 18, 2009.
Ok, so I'm already tearing up.
Lisa's last post struck a chord. And then I read Wendy's response.
I know how I feel, and I'm sure about it, but then I feel bad. Guilty, really. What is it that's not allowing me to let this go? I mean, I completely understand it from the mamas earlier in their journey. Just thinking about the first year brings back a whirlwind of emotions. But I'm supposed to be in that happy place now, right?
Crap.
Like Lisa, I've heard over and over and over again from other parents that they wouldn't take away Ds from their child if that were even possible. I've always responded with an incredulous "Really?!"
Because I would.
If I could.
I know it's a pipe dream and it's not something I focus on or pray for or really even think will ever happen. Ever. But I do visualize sometimes. I wonder what Playette would be like without Ds. In my mind, she's still the wonderful, fun, beautiful little girl we've come to know and love, but she walks. And talks. And her tongue doesn't protrude. And we have no therapy. And...well, she does the same things her typically developing peers do and she's so "normal" that she doesn't warrant a second glance for anything more that simply being a cute toddler.
People wouldn't ask how old she is and then get a confused look on their face after being told the whole truth.
And maybe I would tell them her age in months (even though I said I never would when I was childless) instead of years. I know saying "1" is a lie simply because I'm omitting the details that they're really after. I'm knowingly letting them think that she's closer to 12 months than 24 so that I don't have to deal with what comes next.
There would be no IFSPs.
There would be no trying to educate my family, friends, and co-workers about all things "special needs" and then opening myself up to ridicule and possible alienation.
I know there are good things that have come from being ushered into the Ds community. There are all of you that are a part of that community with me. The people that read about my life just as I read about yours on a regular basis.
There's an openness and a freedom that I didn't have before.
I probably wouldn't be so friendly with Arthur, the 30-something year old man who works for Hope Services at both my job and Playette's daycare. I seek him out. Ask him about his day. His life. And I really care about the response.
I'm real enough with myself not to think that I would have just up and decided one day to change my ways if not for Playette's diagnosis being a factor.
Yes, the blinders have been removed.
I notice instead of pretending that I don't.
But, I swear.
Today.
If I didn't have to think about Playette's peers climbing around playgrounds and building the muscles in their chubby little legs that they've been walking on for a year or more already? I wouldn't.
I realize that time does heal though. Last year this time, I would have broke into tears or at least had some sort of anxious moment when Playette's daycare director made such a big deal about her taking 12 steps 3 times today in front of another family whose son is almost exactly her age. (Back then, I was all about no one knowing that didn't need to know. I've never addressed her diagnosis with them, but if they haven't caught on in the last year +, then I'm 100% shocked, especially since the dad is a doctor.)
I read the other day about another of Playette's peers who has mastered jumping with two feet and I was all, "Wow," and then, "I've heard jumping is going to be difficult for my kid."
Jumping.
And we're not even getting into the future. I have done myself the favor of not thinking about that too much. (So, yeah, I do think about it a little.) School. Bad touches. Stranger Danger. Real friendships. The effects of constantly moving around as a military family...
So maybe tomorrow/next month/next year I won't feel this way.
Who knows.
And if you've made it this far and still wonder why I teared up tonight, and feel like being a little mushy yourself, check out the lyrics.
Because I would.
If I could.
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1 comments:
Wow! Chrystal, I share your thoughts here. I would totally take away the Down syndrome if I could, but I can't so I am making the best possible life that I can for my daughter. Every time I read Welcome to Holland, and it has to be about 20 times now, I get teary eyed at the end where she says that the pain will never go away. Don't feel guilty for being honest with yourself though!!
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