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w September 17, 2003

Loaded For Bear

I'm sure many people understand this phrase, but if you haven't yet heard it, in a nutshell: going into something with all the "firepower" you can muster. I had an extremely unpleasant experience recently with a doctor, and the result was the following essay. Let's call it the first shell in my virtual shotgun.


September 16, 2003

Our neighbors are beginning the process of remodeling their house, and today was the first day of demolition. At nine o’clock this morning, I just looked out the window and thought, “oh, well, it’s good they aren’t going to be starting at eight o’clock”. At five o’clock, I almost went over and took a crowbar out of a worker’s hand. Not, interestingly enough, because I was angry at the noise or the chaos over there, but because I NEEDED THAT CROWBAR. I needed that crowbar to smash through the quagmire that is more commonly called “information” when you are the parent of a child with a disability. If I were a more violent person, and this wasn’t for public consumption, I’d say I needed that crowbar to shake at doctors/specialists/concerned citizens who seem to all be in this vast conspiracy to make me feel like an incompetent and abusive parent because my daughter has a variety of challenges.

I’m sure it will come as no surprise to anyone reading this, but I had a bad day. No, I take that back…I had a bad 45 minutes at one of our local developmental centers, and it unfortunately ruined what had actually been a rather good day. Our daughter, at 18 months, has a host of medical/developmental complications, not the least of which is a fairly significant visual impairment. We have spent the last year and a half attempting to hash out some sort of diagnosis, to no avail. Certainly we have heard “potential” diagnoses, but nothing absolutely concrete as of yet Oddly, this isn’t as much of a concern for us…we know her challenges, we are doing our utmost to address them, and beyond that, there just doesn’t seem to be much else at hand. The good news is, for all the uphill slog, she really is making progress; it’s just slow and compromised by the myriad mitigating factors. But she’s making progress. And she’s happy, and energetic, and trying to communicate with us.

This doesn’t appear to be good enough for the arm-length-long list of doctors we see on a regular rotation. I would like to think that they truly have her best interests at heart, and would like to come up with a diagnosis so that we can maximize her treatment and intervention to the fullest. What comes across is that she is a conundrum, a peculiar constellation of bits and pieces from a wide variety of syndromes and conditions; she would make a brilliant research paper, if only they could pin down exactly what it is they are researching. Let me say it now: I’m tired of my child being treated like a science experiment. I have joined the camp that believes too many cooks and too many recipes ruin the dinner, but the treadmill never stops. I can’t even make it to the real gym to walk on the treadmill; the emotional one is a travesty.

I’m not angry because our daughter has something (whatever that “something” is), I’m angry because parents are seen as an unwelcome but necessary nuisance. Do I think all parents are at the edge of their seats, eager to meet medical personnel halfway and design the most efficient and effective short and long-term plan of care? Good grief, no. I was a teacher, I’ve been through parent conferences; I know that human nature is a powerful force. But it works on both sides, and that is something I wish I could articulate in the monthly torture sessions. I don’t need someone intimating to me that I am not doing enough for my child, I don’t need someone throwing out “big” words in an effort to confound me, but neither do I need someone withholding pertinent information because I haven’t passed the medical boards and therefore am clearly incapable of understanding anything beyond a dirty diaper. Treat me like a partner, and I’ll do the same. Then maybe we’ll get somewhere. Until that point, I reserve the right to be angry and use it to our advantage; regardless of social acceptability, anger is a family value. Just ask anyone who has had to run this gauntlet – there are more of us than you realize.

by at September 17, 2003 8:12 PM | TrackBack Comments

i don't know what a url is, so i hope you get this.

i feel that oooozing frustration that, well, just seems to never disappear. i don't think it will. i mean, really, you ARE talking to people who believe in the food guide. sheesh.

try to always look at the positive things in yourself, being the loving and kind and terrifically gifted parent that you are. Ella knows, so what does it matter if they know not.
Just remember.. you do this for ella and yourself. you do all because you need to.,. .because it is now part of you.. and every single thing that makes ella better and happier,
well... it just makes you much healthier and happier too. you have to acknowledge how much smarter and capable you are than those darn dweebs. of course you are. certainly you know that.
for now, dear heather, you are embarking on a life long mission... one that .. well.. is somewhat of a torture. to be more capable and smartedr an wiser,.. and.. well.. lets face it... totally gifted in
every way... makes it more difficult for you.. imagine how much easier it would be if you were just.. that.. typically middle american.. kinda plopping along. would you chose to be that? it would be easier, albeit..
but would you chose that for yourself and for ella? NOPE. not a chance. so .. plug on. keep the quiet smile... and try not to let the underlings frustrate u, for yourself and for ella.
just keep the upper chin, know that they know not.. and look somewhere else for the answers. they know not, dear heather.. and they never will,... not like you... someday.. you will get all the answers
and , i am sure it will be the most difficult thing you have ever embarked on in your life. but you ARE ready.. you storm trooper ! you ARE. yup.. the heather that i know WILL succeed and WILL survive.
just always try to remember how stupid these people are.. so fighting with them just doesn't help.. "they know not". just keep saying that when the steam starts to rise. Stay well.. but mostly
stay in peace. ella needs you.

love d

Posted by: debbie g on September 19, 2003 11:31 AM
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