Lowered Expectations

I don’t know who Paul Thompson is but he has written what sounds like an awesome book,  Aim Low: A Story About Lowered Expectations.  I  may read it, or listen to it or whatever I have to do to consume this material.  I’m still slogging through the end of Vulgar Favors—the rest of the book was NOT a slog but after watching the FX American Crime Story about the book, like no less than 4 times,  I kinda know how it all turns out. I know what to expect.

I’m pretty used to losing. Not like shooting-myself-in-the-head-in-Miami-after-killing-four people losing but generally coming in 3rd or 4th place. Maybe being the last born of 4 sort of set me up for this–who can tell? It’s not that I’m not ambitious but I’m a cynical lady. I come by this honestly as I was raised by a high achieving father who never even graduated from high school. Usually even the smallest amount of success requires at least a high school diploma but not my old man! My dad was legally blind, very hard of hearing and spent a few years of his young life in a TB Sanatorium . His health may have stunted his formal education but he was a very smart man and started working first for a PR firm representing sports teams then as a newspaper reporter and retired as a political appointee heading the communication department of a state agency in Ohio.  What motivated this guy? An underlying inferiority complex because he couldn’t serve in the military because of his vision and a burning desire to get out of the house. WTG, pops!

He always told me how glad he was that none of his kids got “his eyes” so when two of my three children ended up with his vision disorder (which is fucked up on the surface because this genetic disorder is supposed to be a recessive trait) he was crushed. Sometimes in the darker part of my depression I think that I crushed my father with the disappointment in knowing that my kids would suffer with “his” bad genetics.  My boy was born a few months before my dad died over 20 years ago.  I can still see my dad holding him—staring as his eyes and searching for the tell tale signs of searching nystagmus. He never lived long enough to see how very little my son’s  low vision affected his development and how resilient and happy he has turned out. Everything in the world is ever evolving and totally unresolved, closure is a myth.

My dad did see my daughter struggle both with low vision and autism. I pulled every political string, made literally hundreds of phone calls and was able to put together a home based therapy program for her using only college students and a psychologist who received payment through nebulous governmental funding. It was shaky for the first few months but after some time, we secured funding to get everyone paid through Ohio’s Medicaid Waiver program. It was very, very hard to pull all of these resources together. But everything about my daughter was very, very hard.

I had dreams of success for her, that she would be able to graduate with a typical high school class, that she would get a menial job, that I could see her someday having friends. But none of that transpired. I would move the goalposts to lower and lower hopes for her future but she seems to only develop more health issues.  It’s like she’s racing to the bottom sometimes. Thankfully this new federal administration has lowered rock bottom so she still has a ways to go.

Here’s the kicker, that girl was a success with her home therapy! Her testable IQ went from 40’ish to 60’ish! Amazing results! But she still communicates at a 2 year old level. She’s almost 24. No job, even menial jobs will hire a 2 year old. Plus, as amazing as it seems, 2 year olds aren’t motivated to work. My daughter doesn’t want to work, she hates working. So I guess she really is more like everyone than I give her credit for.

I can’t control the genetics that make my kids, or the genetics that make me. Not yet anyway. I can’t control the cancer that killed my dad or the fact that he wouldn’t accept treatment even if he had caught it early enough to be  treated. I can’t take back the 10 years that I poured into my daughter’s home therapy to the determent of  my career, my education, my friendships.

Sometimes, I feel like a failure. Like I didn’t set my expectations in the right direction…that I aimed too high or too low. But it is really the process of trying that mattered. The living in hope. Hope that my daughter will still improve with time and experience enough to contribute something besides a job for someone else or that I will enjoy my job more or that we will win the lottery even though I always forget to buy a ticket. We just have to do like Freddy Rumsen said to Don Draper in Mad Men, “Just do the work, Don” just do the work.

I can’t quit just beacuse I’m losing.

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