I just spent another 45 minutes writing an email with five people cc’d on it, regarding Owen and what his school/therapy/home program might be for the remainder of this school year. It is so infuriating that I need to fight so f-ing hard for something that should be so obvious to these people. How is red tape so unbelievably prevalent when dealing with children that are obviously so desperately needing help, guidance and an education? It’s not like I’m walking in and asking for a full Special Education program with a dozen therapies per week and a home program for a kid with a lisp!? Owen had a stroke, is missing – missing – part of his goddamn brain, and talks like he’s half his age. His speech is so weak that we can’t even begin to assess his mentality or cognition.
All of this so, so clear after just five minutes of meeting him, and instead of trying to help him, educate him, and assess what his needs are; I am once again gathering paperwork, writing emails, sitting in meetings, getting on conference calls, and watching the days, weeks, months slide away. I have an ongoing image of one of those “day of the week” calendars where you see each day being ripped off by the wind and flying away in a montage, going through my head. It’s beyond my comprehension, but these are not my rules. I don’t write the laws. I don’t set the regulations. I don’t sit behind a desk and red stamp everything that comes across it just because legally I can. Whether it’s warranted or not.
When I was in my senior year of high school I dated a guy who was completely obsessed with U2. If you read my previous blog post, How I Like My Eggs, you know that meant that I also immediately decided that U2 was the greatest band ever. We would listen to the Joshua Tree album continuously in his car, and while the music was like, totally awesome, I was particularly struck by the song “Running To Stand Still”. They lyrics seemed so apropos to whatever angst and frustration I was feeling about my life at the time, and are even more so now…
And so she woke up
Woke up from where she was lying still
Said I gotta do something
About where we’re going
You’ve got to cry without weeping
Talk without speaking
Scream without raising your voice
She’s running to stand still.
That is my life now. I wake up every morning trying to figure out how I can do something about where my family is going, how I can do something about Owen’s latest therapy, how I can do something to compel the powers that be – at the public schools, at the insurance company, at the DMV, in his music class – to make things better for Owen. I have to do something.
But here’s the thing: I can’t. So much of this is out of my hands. Out of my control. Other people have the power to control and decide so much of Owen’s fate and it kills me. On top of that, the level of politicizing that occurs over the treatment and education of a disabled three year-old boy is incredible. How is this a fucking question? Why do I have to convince you to help him? Why does the insurance company keep kicking back claims from the same damn therapist that he’s been going to two to three times per week for the last year? For the same services that he’s been receiving since he was five weeks old? Even they don’t know what to do with him – there aren’t any codes for a toddler with a stroke. There’s no code for a brain malformation that only sixteen people in the world have – there’s not even a name for it – why would there be a code for it? So their response is to try not to pay for it. Because they can’t code it.
So I want to call everyone up that says “no” to Owen and scream at them at the top of my lungs. To curse them out and their underlings and their bosses and their bullshit red tape that is getting in the way of helping my son get better. Their red tape that means that all of the money my husband works so hard to earn to provide for our family to live a comfortable life, is now going towards making sure that one day Owen can have a life. Any life at all that means he’s happy and independent and capable. And at what cost? Right now that adds up to $2,470 per week.
College? Getting out of our condo? Annual vacations? They’ve flown out the window with those “day of the week” pages.
But I can’t scream at those insurance people. I can’t curse out the bureaucrats delaying and denying Owen the educational, therapeutic and developmental services he needs. Because there’s a game to play. We are all just playing a game of chess or Risk or poker. Don’t show your cards, plan five moves ahead and do your best to project what your opponent might be strategizing to do.
Most important of all – keep that poker face. Never let them see you sweat. Never let them see you rattled. Keep up an appearance of calm, confidence, and control.
If I went and screamed at all of those people, I will have lost my “hand”. I will have lost my cool, and therefore given away my desperation for what they have that I don’t. I will be written off as emotional, and therefore unable to compromise or reasonably be dealt with. And while it would make me feel infinitely better – It will be to Owen’s detriment.
So I sit here and write endless respectful letters, and have dozens of polite conversations in meetings and on calls. And I collect binders full of letters attesting to all that Owen can’t do, and how far behind he is, and all of the things people can’s tell us about his diagnosis and prognosis.
And then I walk away from my computer, or put down my phone, or walk out of the meeting and I find myself shaking, and sweating, and crying as my body releases all of the tension and frustration and heartbreak I have been holding in. Because I cannot help my own child.
And then I wait…and wait…and wait…to do it all over again.
I’m running to stand still.